I think I've tried every med you mentioned, including THC I live in Canada and there are dispensaries on every corner. I learned I hate being high lol. I now just take 10 mg Baclofen and 0.5 mg clonazepam at night, and I forget sometimes. Luckily for me, I find constant stretching throughout the day, especially upon waking and before going to bed, to be really helpful and it works. Stretching for a good 10 minutes at a time, and holding stretches for at least 30sec-1 min. Also, physiotherapists in my experience know nothing about MS and tend to have exercises only fit for recouping after accidents. It is rare to find a Neuro physiotherapist, at least where I live. I find Dr, Gretchen from the MSing Link to have valuable exercises for those with MS. She has a book, Youtube channel, podcast, IG, facebook and a website https://www.doctorgretchenhawley.com/TheMSingLink I'm not affiliated with her in anyway, I just find her exercises helpful. She has paid and free content to offer and helpful tips. She is a MS certified physiotherapist. The exercises are all meant to be done in the home.
I really have to keep moving and exercising to avoid spasticity. I know I am fortunate that I am still able to do that (and I hate exercising) I know it's not just that "easy" for some to keep moving and participate in daily exercise and accessibility can be a barrier. I am sympathetic to that. I'm sharing what works for me.
Love to all my fellow MS'ers and thanks to Prof. G. Ok, love to you too haha!
I've had great success with Botox in a number of areas. In the hips we do pulse radio frequency ablation with some Botox and my physio couldn't believe how my range of movement increased in my legs. Yes they felt weaker but the pain was improved and we were then able to work on strengthening those muscles whereas previously the legs were too stiff so couldn't access those muscles anyways. It means even when the treatment wears off and before the next lot I have improved strength in other muscles. I also take baclofen but find 4 times a day best.
Dec 13, 2023·edited Dec 13, 2023Liked by Gavin Giovannoni
I have horrible spasticity in my hips, spine, and legs. To the point it pulls my spine and hips out of alignment and my legs jump as though I have Parkinson's. I've tried Tizanidine and Gabapentin (neither helped much). I also have Baclofen, but the spasticity is much worse when it wears off, plus, it does create a cog fog which steals away (my) ability to work and function.
I've mentioned in another post, I've found a decent amount of relief for the restless legs by supplementing ferrous sulfate, after almost a year of docs trying to figure out what was wrong. (My Iron levels checked normal, but ferritin iron levels were so low, I was actually anemic) I think this should be a common test for pwMS, as ferritin is associated with EBV.
While physical therapy and strength training are key (for me) to "hold" my spine and hips in place--I start this up again next week--and ferrous sulfate supplements are necessary to ease my spasticity--I want a real and lasting solution because Spasticity affects the "quality" of life, and yes, there are meds, but they also affect the quality of life, and I want QUALITY, or what is the point?
You know the question, "Would you rather live longer, but with progressively worsening health (physical disability and all the comorbidities that come with it, cognitive decline and increased chronic pain) or would you rather live only another decade or so, but with a better quality?" The answer for me at 52 is easy--give me 15 quality years, because here's an unfortunate truth. As we get older, even with a disciplined diet, correct supplementation, and daily exercise... it gets harder and harder to maintain a solid quality baseline. We have less reserve to hide old accumulated damage and fight back new, less ability to recover from falls and common sicknesses, and a faster BVL which piles on top of normal age-related cognitive decline which brings its own set of mental health issues like depression.
Don't get me wrong... I'm putting in the work. I'm following the research. I'm in the fight, but it's not for the long haul of simply "managing" the worsening of symptoms, it's biding time for a breakthrough therapy--I feel it, we are close!--and a quality for the immediate.
Ferritin. Yes needs looked into. I have Ppms. I have a Rare pair of H63D genes that caused Iron overload. Hereditary Hemochromatosis. Did 17 phlebotomy, or blood letting. My ferritin dropped to #9 for about three years..iron deficient they said. Had air hunger also.
This then diagnoised as neuromuscular muscles in chest, causing lungs to work poorly. No way found to correct these muscles. On 02 24*7 now.
Oh, I'm sorry to hear that. That is tough on top of everything else. And crazy that low ferritin can also be tied to iron overload! Iron deficiency is what they are telling me as well, so supplementing Ferrous Gluconate, but maybe I shouldn't? That's what I'm reading up on now. I swear, it's a game of dominos where one thing affects another, and the rules keep changing. Sending you good thoughts, JoeY.
I would definitely have a think about any iron supplements! I also avoid vitamin C with food. Probably worth a chat with a haematologist and to think through a treatment or some sort of management plan. If left untreated can cause serious issues. Best and positive thoughts to you both
Thanks. I'll be contacting my GP today for a hematologist referral, and if you have time, I’d appreciate your thoughts on this…
In 2021 my ferritin levels were discovered as low (#6). Diagnosed anemic, I was placed on ferrous gluconate 324 mg 2-3 times a day. Severe neck and spinal pain also started just before/around this time.
Ferritin levels reached #34 in six months, but my creatine levels were still low, so they ordered a kidney ultrasound which didn’t show a cause for the abnormal creatinine but found several kidney cysts. Chronic pain in joints and spine continued. Ferrous gluconate was reduced to 1x daily.
ER visit a few weeks later resulted in kidney stone surgery, where they told me the original scans showing cysts in kidneys were misread, as new ones showed them in my liver. I was then referred to Hepatology, and because the pain continued, I was also sent to the Spine Center.
Spine Center found no bone abnormalities so offered no solution for the constant pain. However, the Hepatology’s FibroScan showed Fibrosis scarring of liver as mod-severe at LSM 11.5, just one point below cirrhosis, and CT scan showed one benign liver tumor, and 2 cysts even though work up for etiology of underlying liver disease was overall negative. They wanted to biopsy, I said no, wanting to wait and rescan.
Rechecked six months later and liver was found NORMAL at LSM 4.2. No explanation found but will repeat scans yearly moving forward. Chronic pain in my neck and spine, however, continued.
Which leads me to my theory question…
Now knowing low transferrin (ferritin) in plasma (blood) indicates iron overload which suggests hemochromatosis where overloaded iron is deposited in tissues and organs (symptoms being liver damage (cirrhosis) and joint pain), was this the root of both my spine pain and liver issues?
If so, did supplementing ferrous gluconate for the low ferritin cause it? And when levels reached normal and the dosage was reduced, did that play into the reversal?
After identifying that I do carry the three (HFE) gene variants with double alleles and seeing that the timeline matches, I suspect it did, but want your thoughts since you live with Hepatology, and I may not have a full understanding of the mechanism. Any insight is much appreciated.
Very difficult to answer as the haemochromotosis was captured relatively early 33 years old for me and in response to blood tests for other symptoms. My liver function is not as good as I would expect for someone who hasn’t drank any alcohol for over 8 years and suspect it is as a result of some cirrhosis from an enthusiastic period from 18 to 30 years of age. So no particular symptoms that in hindsight would be put down to harmochromotosis specifically. The only thing was that I did tend to get asked if I had been on holiday during the winter season as I looked tanned for no reason (know it was my haemo now).
A bit different for women as menstruation cycle will obviously have an impact as well as if you were / are a regular blood donor.
I can’t remember my ferritin levels for this quarter as the test was sent back with not enough information and I continued to give blood as usual.
If you think that you have the condition I would stop iron supplementation and re baseline blood work to understand where you are now and then plan mgmt approach.
My biggest problem was that a lot of the symptoms also were similar to MS so just out things down to it and I was doing what I could to manage the haemo hence ignoring further investigation
Common symptoms from NHS uk include:
feeling very tired all the time (fatigue)
weight loss
weakness
joint pain
an inability to get or maintain an erection (erectile dysfunction)
I just looked up “hemochromatosis” and the symptoms are dead on to what I have experienced. I’ll read up on it, but I’m curious how you tested for this and what you do to treat?
There is a genetic test for it. My mother also has it but my twin sister doesn’t have haemochromotosis. Just me with MS. It was identified after investigation into numbness and tingling down my left hand side of my body. (30 years old) elevated iron levels were the only abnormal thing and no mri taken. This was in 2008 so maybe the watch and see approach from the neurologist as otherwise all other things seemed normal. Although in hindsight if he had asked, sexual function had fallen off a cliff and clonus in my ankles started being noticeable. As well as some random eye things like floaters in my vision. 2 years previous I had some eye issues and optic neuritis 🤔 they found some inflammation of the optic nerves (I was 28 years old and working in a very stressful job at the time) and it was put down to stress mri unremarkable I believe.
Meant to say. Once test confirmed haemochromotosis I then gave a unit of blood (a pint) every week for about 6 months and then every couple of weeks and then every month for a few years. Now 16 years later I give blood every 3 months to keep ferritin levels in the adult male normal range. This is getting increasingly harder as I have good veins but they are now very scarred so getting the needle in and blood flowing is more difficult.
Jackpot again. I have double alleles of each of the mutant variants.
Lucky me. Well, actually yes, lucky me that you commented, so I can now dig into this. Also, Lucky that while double Allele for each mutant variant, I'm only double "AA" on rs1800730 so only affected by a mild form of hemochromatosis. I'm guessing you have AA on the others which explains the required blood draws. :(
In case anyone else uses a service for Genetic mapping and wants to look them up...
The human Hemochromatosis Protein (HFE) gene Variants are:
C282Y, H63D and S65C mutations which are associated with type 1 haemochromatosis. The RS numbers to search for in your DNA:
rs1800562
rs1799945
rs1800730
Thanks again for the info... I now have some research work to do.
As someone with baby veins who distains IVs, I feel for you. :(
Thanks for sharing the info on how they tested for genetic markers. I had my complete DNA mapped to use to check for the MS variants (I won the unlucky jackpot!) and I use it to counter those variants with accurate supplementation, so I'll go and run a search on these: (from Google search on the markers) Finding two copies of the HFE link gene with the C282Y mutation confirms the diagnosis of primary hemochromatosis.
Ana, what accurate supplementation did you use. On a year trual of all the water soluble B vitamins, except for Biotin, as it effects endocrine tests. Was on high dose trial of Biotin, to lessen spasms and improve walking. But The Trial ended without great results.
Yes, correct, unless taken by a Dr. Blood Mobile that ask for blood in USA, will not take blood if you have MS, nor if hereditary Hemochromatosis. Must be done in hospital, then they treat this iron rich blood as hazardous waste, instead of using it on someone who is anemic.
Learned to accept this, as put on life support of oxygen 24*7 two years ago. Then on a machine that breaths for me, a bipap, hooked to oxygen at night. Ppms for ten years. Baclofen, botox injections keep me walking with a cane. A portable backpack for 02, to walk dogs. My PFT dropped to 10% this last test. Muscles in the chest lungs not working due to MS. No way found to fix or strengthen. Just diagnoised with a disease ontop of ms, 0.4% of 100,000 people get it, Multifocal motor neuropathy. Doing IVIG, but that does not fix lung muscles.
For you to have so much within just the 10-year window of your diagnosis is unimaginable. I hope IVIG helps. Sending all the good thoughts and energy your way.
Has anyone suggested Botox to you? I’ve had my first injections and go back in 6 weeks for the second round. My doc injects these in my hips, my ankles, my inner thighs, and my my quads. It relieves the violent spasms I was getting. It’s expensive; I won’t lie. But it’s either this or a baclofen pump for me. I also take clonazepam and tizanidine. My left leg (before all of this) was stuck in a 90 degree angle.
Your comment above strikes home because I really wanted to believe the Physio's claim that MS isn't causing my spine/pelvic displacement, that others have the same issue, and once it's corrected, I can put it behind me, but... an accident didn't cause my issues, chronic spasticity along my spine and hips did and will continue to do so for no reason, which is why chiropractic can often "reset" the misalignment but I've not been able to "hold" it.
When she said that, I just nodded, wanting to believe and happy enough to have finally found someone who could correctly diagnose and treat the "mechanics." I don't expect her to also have extensive knowledge or understanding of MS. Still, I wish...
I, like you, would prefer not to go down the Baclofen ramp-up rabbit hole, so if the Physio can get things in place and working again, Botox might be the best option to maintain it. You mentioned your doc is the one doing the injections, is this your neuro? GP? Or did you find someone specialized with MS using this as a treatment?
I get all my MS care from the University of Texas Southwestern University UTSW. The doctor who performed my Botox injections (see attachment) told me that if Botox didn’t help enough, he could give me baclofen injections and he said they manage hundreds of baclofen pumps. He works in rehabilitation.
Lisa, thanks so much for the information. I'm going to discuss Botox with both my Neuro and the new Physiotherapist I just started seeing. If it's not available here, I'll look into your guy at Parkland Hospital. Again, much appreciated.
I’m unable to attach the photo but here is his info: Dr. John Thottokara, a specialist in neurological rehabilitation. He is chief of the physical medicine and rehabilitation service at Parkland Hospital, under UTSW. This is an MS specialty clinic.
Great post thanks Prof G. I have significant spasticity, walking sometimes with a cane, but also still riding a bike - woohooo! On baclofen 20mg 3x a day and gabapentin 300mg 3x a day. Working ok - sedation is somewhat of an issue but not serious. Will consider cognitive function - tho not impeding my work. Hoping Ocrevus continues to slow worsening function. 🙏🏼
Micheal, yes on four twenty mg baclofen, six 600mg gabapentin, three 600 mg Lyrica (name brand, as generics did not work) use Nuvigil or Provigil to create alertness from the Cog Fog, or Baclofen Zombie. Just did IVIG infusion for rare Multi Multifunction Neuropathy they found ten years into PPMS by blood test.
But my muscles that control breathing, Drs thought it was neuromuscular weakness. Still no way to repair. Anybody have thoughts? Been on life support of oxygen 24x7 and a bipap that breaths for me at night.
Wow JoeY that sure is tough. Of course your doctors and pharmacists are best placed to help you. The only thing I could suggest you talk with them about is CBD as an alternative for managing spasticity? Might be less sedating. Wishing you the best care Joey
I find the whole discussion surrounding spasticity difficult in terms of knowing you “got it” and therefore seeking a method to treat it. Back in the 90’s with early relapses, there was a period of perhaps a year when my legs were very stiff. And I’ve never been able to run since. The legs became more naturally flexible over time, but it wasn’t for another 6 or so years that I started having “clonus”, or muscle contractions at repeated frequency. That has since always come and gone with various factors, especially use, level of fatigue, time of day and sensations of any kind. Reflexes have increased. The toe goes up because of a contraction, the nail hits the top of the sneaker and is sore after this continues, then the pain causes more intense contractions, and around and around we go. The average amount of time between contractions is 17 seconds, but you can count it off and see which way you are headed (at the moment) - maybe they are increasing or decreasing (then I can decide to take a med if I want).
I use baclofen usually, at night (20 mg as needed) because it makes me drowsy. Maybe it also controls the clonus? When I really want to sleep well, I use the Clonazepam .5 mg. That’s all highly variable. Some nights I’ll take nothing, others when the clonus ramps up, I’ll take 20 mg. twice. I’ll save the Clonazepam for Fri and Sat nights, because I need my best rest for Sat and Sun when I’m out at flea market grounds doing stuff. The Clonazepam for me was a “miracle drug” when it stopped tremors I was having, again, back in the 90’s.
My best guess is that the original relapse changed my muscle function (R leg) a bit, which over time (20 years) caused my arch to collapse a bit (they’ve always been flat). That was a very painful 3 year period where once again, no one could define what was going on and I really had to force myself to walk, but I did. Was it spasticity, or PTTD (collapsed arch) , neuropathy, nerve inflammation, foot drop, out toeing, (I could go on with all the diagnoses that were suggested).
A small personal massager worked great. Don’t forget ice works! I used a compounded med for 2 of the 3 years until things got better; how much did it work?: cyclobebenzaprine, norontin, baclofen and elavil, with the idea of avoiding the zombie effect as it was rubbed in, not ingested.
I wonder, had I done some minor adjustments in the beginning (1995) could I have avoided anything? That is the advice I can give. Check things out as best you can early on when they are (whatever they are), more simple. I get around with a cane when I’m out now, much slower than before. I’m 65 now. Good luck everyone. :-)
Your big toe going up is a classic symptom of MS, called Babinski’s. During a neuro exam, the doctor will gently scrape the bottom of your foot. People without MS will see their big toes curl down. People with MS will experience the toe rising. It’s a reflex. I believe infants toes behave like an MS patient, but as they grow, their toes curl down (not sure what age).
Thank you for your reply, Lisa.. Yes, I’m familiar with the Babinski term. However the point I make is the difficulty in distinguishing a clear “diagnosis” of “spasticity”, and then specifically what to do about it. I get leg spasms wherein the peronial muscle gets tight and the toe goes up. You can force it not to go up, but it’s a conscious effort and not particularly easy. Not painful in and of itself, just disruptive. But when the toe goes up during these spasms and you’re not busy controlling it, the upward hitting of the sneakers by the toe (over time) causes pain. The pain causes more frequent spasms and you can follow the repetition increasing or decreasing by counting it off in seconds. It’s a vicious circle. My comment is, is this spasticity and what can be done about it? Clonus is a good descriptor. Then I list some things I’ve tried. Taking sneakers off will help too; keeping nails trimmed etc., but you can’t permanently keep it from returning (usually when you don’t want to be disturbed). And I have to be put to sleep for MRIs, ("motion artifact") which are not as important as they used to be.
Tom A, good description. A new word for me today. Baclofen tablets, eight 10mg tablets. Found they wore off every three to four hours. Take 40 mg at night to get me thru night, now 20 in morning, 20 afternoon, and 40mg at bed. Botox injections are now at double the amount suggested, a test subject. They only last 50 days, but in usa, can only obtain every three months. Neck, back left, shoulders, arm, thighs, calves,
front top muscles, names of deep muscles, and other muscle names roll off neurologist toung, as he teaches another Dr.
A Old time Neurologist had me try a Tablespoon of Mustard. They do not know why that stops muscle spasms when ate. He also let me make my own quinine, as only in Tonic water, but not enough mg to stop muscles.
Quinine Works, but before you make, go over recipe with Dr.
I''ve never found Baclofen to do anything worthy in terms of leg stiffness, clonus, cramps, anything that pretends to get my legs (especially R) back functioning normal. I can manage short distances and moderate activity for a while, outside. As a matter of fact, I don't remember what it was like not to have to think about that before heading out. Baclofen is a great sleep aid, better than the stuff you get over the counter in the store with less side effects (for me). Does Bac work as a sleep aid by stopping stuff that otherwise would wake me up? Perhaps, don't think so; not going to design my own study! Am curious about the baclofen pump, but all I read (like here) says spasticity needs to be pretty severe first, which I guess I'm not at. If getting about becomes difficult without a chair, might give botox a look-see. Thanks for the reply and info.
Would be scared of botched surgery for baclofen pump, or complications. Have read to many blogs on the down sides. Some good, but others tragic. Yes, I take 1/2 of miy baclofen at night. Think it keeps cramps from awakening me up. What do you use instead?
Are your “cramps” painful in the leg muscles? I get “clonus”- apparently a specific definition of spasms, on average every 17 seconds give or take, when they occur. And they are not painful, but a disturbance (an annoyance). I might wake up, lay there and (for whatever reason, sometimes annoyances- pick any- noise, wife rolling over) the clonus starts up. If there’s a couple more hours I could sleep and I have nothing to do, I’ll take a 20 mg baclofen. Otherwise, to your question, I have previously taken nothing. The clonus is an MS consequence. Sore toe which contributes to clonus, PTTD (look that one up), flat feet from birth, and perhaps spraining my ankle when I fell 4 years ago, are not MS. Put it all together and it’s a confusing mess. Baclofen helps get me back to sleep. Why? ??? don’t know. So it’s not a routine treatment. Thought maybe, “get a pump” and see what happens, but it seems pretty complicated and a burden in itself. But they do give you some kind of preliminary trial to see if it would work. I’ll ask the new doc; see what he thinks.
I don’t give much credence to blog descriptions. I’m much more of a believer in scientific method, double blinded studies, etc. With MS, it is much too easy to let your hopes and beliefs influence your observations.
I think if you’re having to use a wheelchair (as I am), because of spasticity, definitely discuss a pump AND Botox. For me, oral baclofen is useless. I had a pump that, at the time, was inappropriate for me. It’s a very long story but chalk it up to a terrible neurologist I had at the time. I got it removed in 2017. I’m reluctant to do it again because: you have to get them replaced every 5-7 years, so surgery by a neurosurgeon probably every 5 years. Once you have the pump, you have to get it filled and then refilled periodically, you have to get it titrated so the dose is right for you. So I know they work very well for some people; my past experience has definitely jaded me, so do talk to your doctor about it. Medtronic is the company that made the one I had. I’m willing to bet that they still have videos on YouTube about it, and they may still have a video of the surgery itself. They had a nurse from the company in my surgery and if you get one, I imagine they still do that. They know things that the surgeon may not.
I just checked out YouTube-I put in Medtronic baclofen pump and all kinds of stuff popped up. The trade name for baclofen is Lioresol so be aware of that too.
I’ve had success with the Neubie neuromuscular stimulation machine to control spasticity. The Neubie by the company Neufit offers neuromuscular stimulation with a DC (instead of AC). It offers Frequency Specific Micro current. Essentially, FSM is based around the idea of bio-resonance. All living cells give off certain frequencies unique to their type, location, structure, and function within the living system and these frequencies change when cells are under certain stressors. So, it is thought that certain specific frequencies can have a profound effect on tissues and conditions when they combine and intersect a certain way.
“Microcurrent” - Meaning very low intensity, subsensory. I’ve used it to calm spasms in my QL’s in the lower back and in my quads and hamstrings. I combined the Neubie with something called the EES (energy enhancement system) which is a combo of scalar and other types of energy. There is a more detailed explanation here https://eesystem.com/what-is-ee-system/
These are both extremely “alternative” methods of treatment that are completely dismissed by Dr.’s and insurance companies but for me, incredibly effective with no side effects. Expensive of course because they are both out of pocket and not covered by any kind of assistance.
This is the first winter the stiffness has really affected my mobility so my Neurophysio has suggested I try an Exopulse Mollii Suit - https://www.ottobock.com/en-ex/exopulse-b2c
They are seeing some amazing results with MS patients who have tried it so far so can't wait for my trial in the new year.
Unfortunately some of them are so far behind. I have an FES (which has been amazing for my foot drop), my neuro said he’d never seen one before. How are they meant to give advice if they don’t even keep up with these things😩
You've picked on a topic that I feel I have had a lot of experience with. I found Baclofen intolerable, even tiny 5mg doses caused severe belching and gut discomfort. I did take 2x25mg of Dantrium daily for eight years. I came off that because the manufacturer was unable to supply it and a different manufacturers product arrived just as I developed a staphylococcus infection. I incorrectly blamed the change in medication but now, having stopped, I find it difficult to resume. I've also had many Botox injections.
Although I was diagnosed in 1994, I didn't need any treatment until after a bad attack in 2014. Initially, Botox was applied to my medial hamstrings and gastrocnemius, and that was enough.
I didn't find the hospital's physios were any good at all and their hydrotherapy sessions just meant standing aimlessly in water. What did work for me was 3 sessions a week of pilates with good instructors, massage from good remedial masseurs and dry needling.
In my experience a good Pilates instructor runs rings around a physio. Traditionally trained physios seem incapable of understanding how upper motor neuron damage differs from peripheral injury. Nonetheless, all was good until Covid meant a two year disruption in Melbourne of all the services I used (Pilates, Dry needling and massage). Even seeing a neurologist was practically impossible. After our lockdown my body really suffered from the lack of opportunity to move. I had lost dorsiflexion in my left foot, and that, in turn, threw my back out and my toes also started to ferociously curl.
After an 8 year break, I went back to the physios who had done the original botox. This is when I became aware of their 'cookie cutter' approach to treatment. When I saw them I said "can you Botox my flexor digitorum longus and brevis to uncurl my toes". They were desperate to botox my medial hamstrings. Ignoring them I took off my shoes and socks to show them the contractions in my toes so they reluctantly agreed to do what I wanted . After the requisite period, my walking speed had increased 50% and I had some dorsiflexion and better foot eversion. I did ask if they could do it again, as I felt it wasn't completely fixed. Instead they botoxed the medial hamstrings and ignored the lower leg. They might as well have shot me with an elephant gun. On reflection, they should have noticed I had a lateral tilt in my pelvis and that created the illusion of tight hamstrings. As the hamstrings weren't really that tight at all, they had taken away my ability to use my upper leg whilst my lower leg was still a source of problems.
They never looked at things like the tilt of the pelvis, whether my peroneals were tight, whether my tibilais posterior was inhibiting my tibilias anterior and whether my toe curling had resolved.
All they did was timed walking tests, took measurements of the angle of my hip, knee and ankle and asked "what are your goals". I didn't say what I wanted to say about that!
I gave them one more go, asking it they could again do the flexor digitorum longus and brevis as well as the tibialis posterior. Instead they injected the gastocnemius and the soleus. And again, I was crippled, especially by curling toes. When I went back, they saw how i walked and said" the Botox isn't working, why don't you take a card on the way out so you know where to call if you need us. If that's not gaslighting, I don't know what is.
After a year, I found an different doctor who was also a specialist in Botox. She was nonplussed by their approach. So far, I'm happy with her but still have a way to go.
The bottom line of all this is physios aren't as good as real pilates instructors, not all botox doctors are as good as they say they are, dry needling and massage are not luxuries, they are necessities
and the patient needs to have a way of learning what muscles are involved in both flexion and extension so they can join the conversation.
In terms of spasms down the legs, why don't you treat the patient as though the condition is periformis syndrome? I used to get monster spasms but since my periformis was injected with cortisone I haven't had any in years. It will work if the needle penetrates the muscle and breaks up the fascia. Just drizzling cortisone over the membrane won't do more than create sciatic palsy.
Yaaaas to all of this! For me, weights and strength training are the essential miracle workers, plus HITT cardio. I do use physical therapy to monitor and help adjust overcompensation since my one side is much weaker, but having used several different therapists, I agree with you, cookie-cutter approach that often can do more damage. After two different centers with 6 weeks at each, I still ended up with discectomy surgery. And while the surgery relieved the one herniated/sequestered discs at C5-S1 that pinched sciatica, it caused nerve damage on the other side, so I'm at my wits end. My pelvic is also tipped and they always cite "tight hamstrings", but it's the loss of trunk and right glute activation to hold a proper alignment that is my issue. I'd be interested in learning more on your Botox experience if you're willing to share?
Dec 13, 2023·edited Dec 14, 2023Liked by Gavin Giovannoni
Of course, ask away. My guess that the reason your pelvis is tilted is you hike your hip so your foot on the high side clears the floor. The consequence of that will be pain in the trunk of the opposite side. In very simple terms, you need to level your hips. That means exercises that lengthen the lateral muscles on your trunk and exercises that focus on the 'infamous' core muscles. That is Pilates strong suit. To activate your glute, your foot needs to land on the heel and then roll through the plantar so you reach a point where your weight rests on the first joint of the big toe. That's the point that activates the glute when walking. If you land on the ball of the foot, or on the outside of the foot, it won't be activated.
Can I hire you :D You nailed it... I've always had an anterior pelvic tilt, but it's worse now. Plus, when I walk, both feet roll outward in supination which is not new, but what is, is how the foot just slaps at the ground and the hip won't stay in alignment even after a chiropractic alignment. My right hip gave me issues long before the discectomy surgery which addressed the c5-s1 that blew out toward my left side, but now it's worse. I'm desperate to correct it to avoid another surgery. I'm making notes on what you've said for the PT, and I'll be looking at adding Pilates. What would you recommend for botox? How might that help? Again, thanks. Appreciate the chat.
Dec 13, 2023·edited Dec 14, 2023Liked by Gavin Giovannoni
Hi, Before you try the botox path see a good remedial masseur. Get him or her to work down through your back along a group called the erector spinae. Then go down the leg looking for tight spots. At any time that massage hurts yell out "what's the name of that muscle?". That's the only way you can build up a picture of what's tight. The tight muscles will dictate what other muscles will be switched off. A floppy foot can mean the main dorsiflexor is turned off, so you would look for tightness in the tibialis posterior. It could also mean the plantarflexors are too active, so you would look for tightness in the gastrocnemius and the soleus (or the peroneals). I'd then be adding in pilates in a studio that has all the equipment, not just a room full of reformers. On the reformer, I'd be doing a series called leg and footwork. I'd also be doing exercises that look at spinal articulation (i.e you need to be able to move your spine one vertebrae at a time, rather than move like a rigid block). I'd also be doing exercises that have an element of rotation. When we walk, there is a little bit of rotation going on. We don't walk robot-like in straight lines. Your leg doesn't start at the hip, there is a big muscle called the psoas in your torso that acts like a pulley to lift your leg. A pilates instructor knows how to isolate and challenge that. Good pilates instructors work by the motto "do no harm". Don't let them be too timid with you. When your technique is sorted out, work a little harder. There is a safety system built into muscle circuits called the 1b afferent fiber. It will override the signal that tightens the muscle, creating a relaxation phase. Working a little harder can trigger that but don't rush into doing it or you will hurt yourself. A safer way is to find someone who can do PNF stretches on you. Sometimes on a sporting field you will see physios doing PNF stretches when an athlete warms up. Botox is an add-on after you try those other things. I know lot of people like to think of themselves as warriors. Unfortunately most warriors end up dead. Be an elite athlete instead. You want a team of trained trainers who want you operating a peak level. Always give them feedback but make sure you are in charge.
Such great information Andrew – super appreciated! And you made me laugh at, “I know a lot of people like to think of themselves as warriors,” because, hello, I guess we’ve met. lol.
I was diagnosed and quickly wheelchair bound in 2009 at the age of thirty-eight being told the damage was too extensive to recoup. By 2012, I not only was walking, but earned my Black Belt in Shorei Goju and won both the PKC National title in karate forms here in the States, and the ISKA Disney/ESPN international title.
Although I never did return to baseline, and the MS and symptoms never did “go away” The disciplined diet (then Swank) and consistent workouts with a qualified trainer made all the difference. I was in the best shape of my life through my forties even with the MS. The turnabout, and the fact I remained relapse free according to my MRIs shocked my neurologist. However, he did not believe the diet and exercise had anything to do with it, and instead, claimed I had “isolated syndrome.”
Although I didn’t believe either of his claims, words have power, and over time my discipline slacked. And over time, my not so “isolated” MS progressed. The last handful of years it has really gotten away from me. So now, at fifty-two, (just as the entire MS world has fully acknowledged the impact of diet and exercise) I’m fighting to get ahead of it again, but it’s winning. Returning to my wheelhouse, I started boxing early last year determined to get back on track, only to go too hard, thinking I could do all I could before, and ended up sequestering an already herniated disc. Surgery followed, then one setback after another. And here I am.
A long-winded way to circle back to your “warrior” point and say, I am jumping into Pilates, but will go slow, armed with all that you shared in mind. Again, much appreciated.
I have a great Botox Neurologist Specializes in all the muscles. I have been doing botox for over ten years. Know it keeps me walking with a cane. Dr can roll off his toung the names of muscles, the deeper muscles. I receive botox from neck muscles, shoulder, arm, front upper muscles, to lower limbs of thighs, calves inside and out, one spot for foot drop. He was showing resident Dr at University of California, Sacramento USA, how deep some of the muscles were, and me keeping track of areas that spasm.
I am on maximum amount of Baclofen and also have found a Tablespoon of yellow Mustard eaten will stop spasms. Quinine also stops, but in usa, only sold in tonic water (gin and tonic). You can make your own from internet jeffery morgan recipe, but check with your Dr, so you do not overdo.
Tablespoon of yellow Mustard will stop spasms? Awesome...looking it up and will try. I believe you're in the States, right? If so, what is the name and location of your Botox Neurologist? Is he/she in Calif?
I live in the U.S. and I’m surprised by so many of you who are unhappy with your physios (I think this is the same as what we call physical therapists?). The one I’ve been seeing for the past 4 years is expert. She’s certified in neurological disorders. She has me use a standing frame often since I’ve become so tight, I don’t ever stand properly on my own. I’m planning to buy my own once the supplier has a used one I can buy at a reasonable price (anew one is $6,000!). Do any of you use such a contraption? I’m puzzled by how differently spasticity seems to be treated in our two countries.
Hi Lisa, I'm in the States as well and thought a Physical Therapist and a Physiotherapist were the same but have found that while both aim to optimize movement and function to decrease pain, the approach and techniques are quite different.
Physical therapists (most common) use exercise and equipment to help patients recover whereas physiotherapists use manual massage techniques designed to manipulate and transform muscles, fascia, nerves, and joints.
I used to see a chiropractor who performed a type of "Active Release" and it was magic. He moved and I couldn't find anyone else who knew anything about it. In researching physiotherapists, I found they use this technique, so I'm sold. Took me a minute to locate a true physiotherapist in my location, but I did and am scheduled for next week. :) It's fantastic that you've found one as well.
In Australia, it's very clearly delineated. What I have noticed is the different professionals often have an undercurrent of dislike for each other's approach but you have to prod them to make them say it.
Here, physiotherapists rule the roost, myotherapists are undervalued and chiropractors think they are better than they are. Osteopaths think they have the answers. Remedial masseurs are at the bottom of the tree but a good one is pure gold.
When I went to Scotland a few years ago, I was surprised by how intimidated a physiotherapist was when I started naming the muscles. Later, I booked to see a physio in a medium sized city to get a release for my shoulder. He was about 50 years old. After a little while, I became suspicious so I asked him how long he had been doing massage. He answered " I was the gardener here until 6 months ago but I've always been interested in massage. So I decided it was now or never." If I'd known in advance, I would have given him a miss.
Later, I was in Italy and went to see a physiotherapist for some work on my legs. He was just a very average masseur, but the locals thought he was great. He called himself a physiotherapist but he would not have that title somewhere else in the world.
It's always worthwhile having a conversation with the person who is working on you so you learn something about them.
Just a quick note of sincere thanks for sharing your experience, insights, and info on physiotherapy. I finally found a physio-center here, and after a full biomechanical analysis, I finally have some real answers!
I have a locked Sacroiliac joint with a pelvic girdle misalignment pattern called “windswept ischium” which is caused by hip dislocation or subluxation, joint weakness, and/or contractures(spasticity). <-figures.
This caused my L5-S1 disc to herniate, requiring surgery, and it's the root cause of the chronic pain that started in 2019 and has progressively worsened. What's crazy is how many specialists I've seen over the last four years and how ALL of them missed it.
Lots of work ahead, but I can't tell you how relieved and grateful I am to finally be in the right hands. Thanks again.
Hi Ana, That's great news. Subject to what they do, Pilates can help with that. I dropped you a quick note on FB messenger (I hope it was you!) Let me know if you'd like a copy.
LOL to the gardener turned Physio in 6 months. (But hey, we all have to start somewhere. Here's hoping he was maybe working the grounds to pay for schooling?) And agree we have to look into everyone's credentials before adding them to our care team. Blind faith in medical isn't a luxury for those with chronic illness.
Thanks very useful, I do not have spasticity but spasms and am using the same drug profile as described. These spasms are primarily violent painful ankle dorsiflexion and hip flexors, every 20 secs for hours, following the same circadian pattern as described. Any ideas for management?
Sounds as if someone with your type of symptoms needs medication. I suspect this person will have some say in which drug they choose. You will need to discuss this with your HCP.
My understanding is that spasms as you describe ARE spasticity. Mine started with my left leg rising on its own as I lay on my back. It got much worse from there.
This type of spasm is called a flexor spasm and is very different to an extensor spasm when the leg straightens. They are both indicative of involvement of the pyramidal or corticospinal tract but at different levels in the nervous system.
If it happens lying on your back, I presume sitting is not always comfortable. Try this, as it worked for me. - Get someone to either inject the periformis muscle with cortisone (but the needle must go into the muscle) or try botoxing it ( I haven't done that). After a few days get someone to work on the trigger point for the short head of the biceps femoris. I guarantee that will be uncomfortable!
The reason is the sciatic nerve passes either under or through the periformis muscle. If it's squeezed, it will create cramps down the leg. The sciatic nerve divides just above the knee into the tibial nerve and the peroneal nerve. The only muscle enervated by the peroneal nerve above the knee is the short head of the biceps femoris. That muscle, in turn passes below the knee and interacts with muscles on the outside of your calf, which are all plantarflexors (pushing your foot down). Might help. It's very local, whereas the drugs are systemic.
I actually have gotten Botox once and am scheduled for the second round in about 6 weeks. It helps although doc wants to use more next time. I worried it would hurt (big needles), but it wasn’t bad at all. Doc said it’s because there are fewer nerves there than, say, your face if you got it for cosmetic reasons. It went pretty quickly. I asked what would happen if it stopped working and he said he would switch to injections of baclofen. So that, too, is an option.
It seems to me that we have the same symptoms. Sativex helped me for a few years, but the effect wore off. I then self-medicated with benzodiazepines with the help of my GP because the neurologists had no plan (unfortunately they still don't) and in the meantime I had serious adductor problems. I stopped taking the benzodiazepines after a year for obvious reasons. Then I gave myself the wrong diagnosis: RLS, but was given the right medication. I know Prof G hates pramipexole, but for me it was rescue in extremis. It's not perfect and the symptoms are now horrible if I forgot a tablet, and that scares me. At least it doesn't sedate me and has no effect on my muscle tone. What else can I do? As I said, the neurologists don't have a plan. I don't have any stiffness in my extremities, so no spasticity, but it's not RLS either - they say ...
I'm secondary progressive but relatively benign and luckily haven't needed anti-spasmodics regularly. This summer though my lumbar spine seems to have thrown in the towel and I suspect surgery is in my near future. There is nerve root compression, spondylosis, severe spinal stenosis. Basically: a big ouchie.
For the pain and muscle spasms I'm now on pregabalin, tizanidine, tramadol and paracetamol which is three times more meds than I'd normally go to for pain but this is brutal and still breaking through nastily at times, so needs must. I'd only used tizanidine before for MS spasticity (and paracetamol for pain, obviously).
I find the zombie effect unpredictable; sometimes I will be out for the count a whole morning or afternoon; at others I will be 'high', a tad over-relaxed but stay awake. There are times when it doesn't seem to affect me at all, though I realise it must at some level. Tizanidine is the most sedating but has the shortest-lasting effect in that direction. This particular mix has been prescribed by my GP; my neurologist has never offered sativex and when asked about it (a while back) commented that it would make me a zombie sat on the sofa all day, which is EXACTLY where I am right now on the current cocktail but I do wonder, would it?
One odd thing I have noticed is that one of these drugs - I'm guessing Tizanidine - messes with my ability to swallow. After a few scary episodes of coughing/choking/stuff going down 'the wrong way', I now eat before I take it, or at least three or four hours afterwards. Also, typing on my laptop can be an adventure. I'm sometimes looking RIGHT AT that key but can I steer my finger to it?
When I first started to get these spine-related symptoms back in the spring I assumed they were an 'MS thing' but as things developed and worsened I knew they weren't; I've had MS over forty years and know how 'mine' behaves. The GP who knew me best believed me, took me seriously, did blood tests and sent me for x-rays and MRIs but the three others in the practice I saw first, in turn, apparently didn't. When I asked one for better pain relief she looked at me as if she thought I wanted something to sell outside a pub on a Friday night. My 'good' GP - both face to face and in various phone conversations - repeatedly told me that if I lost control of bladder or bowels that I was to go straight to A&E as a matter of urgency, so when I woke up cold one Saturday morning and realised I had thoroughly wet the bed (something that had never happened before with MS) I went off to my local hospital like a good girl, scared witless.
Now, I know it was a Saturday but they booked me in under the wrong thing ('generalised weakness' - what the heck even is that?!), took some blood then chucked me out in the waiting room for four hours. Then a doctor came out waving her arms and saying over and over again 'MS, MS, history of MS, chronic problem, MS, not acute, MS' whatever my question or symptom. We won't know anything until you have the MRI, says she. Back I go out in the waiting room for another three hours 'waiting for the blood results'. When we got those they were normal, so I was discharged home (with a discharge note bearing virtually no relation to the conversation that took place nor the problems I was having and that they were new). I'd had no meds all day so was not feeling great and this unwilling to listen to me and the willingness to assume my problems were MS relating was humiliating.
Whether connected or not we - that's me and my 'good' GP - then had a heck of a job getting the right bits MRI scanned. My GP, in consultation with my neurologist, had asked for a full cord MRI with contrast but when my appointment letter came back it was for head, cervical, thoracic spine. We made about twelve phone calls between us and my GP sent two or three emails to get them to scan my lumbar spine (we knew there was an issue there as part was visible on x-ray). It turned out that the consultant radiologist, seeing my history but not actually me or discussing it with my doctor or neurologist - had decided that it was 'more appropriate' to scan for MS as it was 'more likely'. I was all for having a full scan for MS as well as I'd not had one since 2017, but they REALLY needed to look at the lumbar spine... Eventually we managed to persuade them, amidst dire threats of 'You'll have to be in the machine another twenty minutes!', to do the whole thing, brain to bum, so to speak.
As it turned out by the time I was 'in the machine' I'd got a lot worse and was unable to tolerate longer than about twenty minutes on the MRI scanner's bed at a time (I haven't been able to lay down flat in my own bed for about three months). So, we have done the lumbar; we have done the head, in two separate appointments but we still haven't done the bit in the middle. Normally if I have a new issue which I suspect is MS related I get told 'You can't blame everything on that' and get sent off pronto for other tests or to other departments but this time it was absolutely the opposite way round.
Very frustrating. I'm so grateful for the NHS but when you hit walls like this when you need them to listen, it is frightening.
I recently attended A&E because I lost movement in my arm and leg on right side and had a fever. All the dr wrote in my notes was numbness/tingling, of which I had neither. Urine dip test was negative but uti was written in my notes. No mention of the cellulitis on my leg was made!
Previous visit was with a broken ankle, dr said it wasn't even sprained. Had to get a second opinion. Hospitals can be scary places.
What an ordeal! I'm so sorry you went through that and frustrated that the "you can't blame it on MS" BS is so common. MS affects everything, and everything affects it. Have you found a solution?
Dec 13, 2023·edited Dec 13, 2023Liked by Gavin Giovannoni
Great post thank you. I use sativex in addition to baclofen which has allowed me to almost half my baclofen dose to 20/10/10, that has helped to reduce my fatigue levels. I use 4-5 sprays of sativex daily it has really reduced my spasms. In addition I have a motomed exercise bike (assisted peddling) that I use 3-4 times a week and I can definitely tell that helps too.
Physio (stretching and massage really) plus having a massage gun (small lightweight )help too
Need to reduce my baclofen dose if I ever have a temperature to avoid being like a rag doll.
I have PPMS and real problems with Spasticity. Baclofen did nothing for me. Stretching every day, infrared sauna, massage gun is very good, regular massage, weekly pilates all help. I tried loads of different types of CBD and got nothing until on the recommendation of my good friend Kev with PPMS Supreme CBD. It has made a real difference for me with my spasticity it has made it bearable. It is not cheap but I would recommend it. It has been a real game changer for Kev also. Keep up the good work Gavin.
Empirically, I'd arrived at taking baclofen around 4am (regular wees ensure I wake up often) and reducing during waking hours. Recently, I'd gone up from 30 > 40mg/day but after reading your article, think I'll revert back and also go back to pill-cutting, for little & often. I'm stiffest first thing in the morning and mid-evening, so will emphasise dosage at 4am and 9pm.
Tried most of the oral drugs, with little to no success; pregabalin worked for about 3 weeks, then it didn’t. Strangely enough, using the Cionic sleeve for about 6 weeks lessened the spasms down to where I could sleep most of the night with only an occasional twitch. When I went for a month without the sleeve ( hardware problem), the spasms returned. I was only wearing the sleeve 4-6 hours a day. They just sent back my fix, and after a week- spasms are really minor again. Worked way better for me than pills and stretching.
Looking into that, thanks for sharing. And at $2,600 it's expensive... Do you find it substantially makes a difference in your gait, foot drop, and so on?
I think I've tried every med you mentioned, including THC I live in Canada and there are dispensaries on every corner. I learned I hate being high lol. I now just take 10 mg Baclofen and 0.5 mg clonazepam at night, and I forget sometimes. Luckily for me, I find constant stretching throughout the day, especially upon waking and before going to bed, to be really helpful and it works. Stretching for a good 10 minutes at a time, and holding stretches for at least 30sec-1 min. Also, physiotherapists in my experience know nothing about MS and tend to have exercises only fit for recouping after accidents. It is rare to find a Neuro physiotherapist, at least where I live. I find Dr, Gretchen from the MSing Link to have valuable exercises for those with MS. She has a book, Youtube channel, podcast, IG, facebook and a website https://www.doctorgretchenhawley.com/TheMSingLink I'm not affiliated with her in anyway, I just find her exercises helpful. She has paid and free content to offer and helpful tips. She is a MS certified physiotherapist. The exercises are all meant to be done in the home.
I really have to keep moving and exercising to avoid spasticity. I know I am fortunate that I am still able to do that (and I hate exercising) I know it's not just that "easy" for some to keep moving and participate in daily exercise and accessibility can be a barrier. I am sympathetic to that. I'm sharing what works for me.
Love to all my fellow MS'ers and thanks to Prof. G. Ok, love to you too haha!
I've had great success with Botox in a number of areas. In the hips we do pulse radio frequency ablation with some Botox and my physio couldn't believe how my range of movement increased in my legs. Yes they felt weaker but the pain was improved and we were then able to work on strengthening those muscles whereas previously the legs were too stiff so couldn't access those muscles anyways. It means even when the treatment wears off and before the next lot I have improved strength in other muscles. I also take baclofen but find 4 times a day best.
I have horrible spasticity in my hips, spine, and legs. To the point it pulls my spine and hips out of alignment and my legs jump as though I have Parkinson's. I've tried Tizanidine and Gabapentin (neither helped much). I also have Baclofen, but the spasticity is much worse when it wears off, plus, it does create a cog fog which steals away (my) ability to work and function.
I've mentioned in another post, I've found a decent amount of relief for the restless legs by supplementing ferrous sulfate, after almost a year of docs trying to figure out what was wrong. (My Iron levels checked normal, but ferritin iron levels were so low, I was actually anemic) I think this should be a common test for pwMS, as ferritin is associated with EBV.
While physical therapy and strength training are key (for me) to "hold" my spine and hips in place--I start this up again next week--and ferrous sulfate supplements are necessary to ease my spasticity--I want a real and lasting solution because Spasticity affects the "quality" of life, and yes, there are meds, but they also affect the quality of life, and I want QUALITY, or what is the point?
You know the question, "Would you rather live longer, but with progressively worsening health (physical disability and all the comorbidities that come with it, cognitive decline and increased chronic pain) or would you rather live only another decade or so, but with a better quality?" The answer for me at 52 is easy--give me 15 quality years, because here's an unfortunate truth. As we get older, even with a disciplined diet, correct supplementation, and daily exercise... it gets harder and harder to maintain a solid quality baseline. We have less reserve to hide old accumulated damage and fight back new, less ability to recover from falls and common sicknesses, and a faster BVL which piles on top of normal age-related cognitive decline which brings its own set of mental health issues like depression.
Don't get me wrong... I'm putting in the work. I'm following the research. I'm in the fight, but it's not for the long haul of simply "managing" the worsening of symptoms, it's biding time for a breakthrough therapy--I feel it, we are close!--and a quality for the immediate.
Interesting regarding ferritin. I have haemochromotosis and MS. Will do some reading around it.
Ferritin. Yes needs looked into. I have Ppms. I have a Rare pair of H63D genes that caused Iron overload. Hereditary Hemochromatosis. Did 17 phlebotomy, or blood letting. My ferritin dropped to #9 for about three years..iron deficient they said. Had air hunger also.
This then diagnoised as neuromuscular muscles in chest, causing lungs to work poorly. No way found to correct these muscles. On 02 24*7 now.
just had another rare diagnosis of
Multifocal Motor Neuropathy (MMN)
Oh, I'm sorry to hear that. That is tough on top of everything else. And crazy that low ferritin can also be tied to iron overload! Iron deficiency is what they are telling me as well, so supplementing Ferrous Gluconate, but maybe I shouldn't? That's what I'm reading up on now. I swear, it's a game of dominos where one thing affects another, and the rules keep changing. Sending you good thoughts, JoeY.
Best, Ana.
I would definitely have a think about any iron supplements! I also avoid vitamin C with food. Probably worth a chat with a haematologist and to think through a treatment or some sort of management plan. If left untreated can cause serious issues. Best and positive thoughts to you both
Thanks. I'll be contacting my GP today for a hematologist referral, and if you have time, I’d appreciate your thoughts on this…
In 2021 my ferritin levels were discovered as low (#6). Diagnosed anemic, I was placed on ferrous gluconate 324 mg 2-3 times a day. Severe neck and spinal pain also started just before/around this time.
Ferritin levels reached #34 in six months, but my creatine levels were still low, so they ordered a kidney ultrasound which didn’t show a cause for the abnormal creatinine but found several kidney cysts. Chronic pain in joints and spine continued. Ferrous gluconate was reduced to 1x daily.
ER visit a few weeks later resulted in kidney stone surgery, where they told me the original scans showing cysts in kidneys were misread, as new ones showed them in my liver. I was then referred to Hepatology, and because the pain continued, I was also sent to the Spine Center.
Spine Center found no bone abnormalities so offered no solution for the constant pain. However, the Hepatology’s FibroScan showed Fibrosis scarring of liver as mod-severe at LSM 11.5, just one point below cirrhosis, and CT scan showed one benign liver tumor, and 2 cysts even though work up for etiology of underlying liver disease was overall negative. They wanted to biopsy, I said no, wanting to wait and rescan.
Rechecked six months later and liver was found NORMAL at LSM 4.2. No explanation found but will repeat scans yearly moving forward. Chronic pain in my neck and spine, however, continued.
Which leads me to my theory question…
Now knowing low transferrin (ferritin) in plasma (blood) indicates iron overload which suggests hemochromatosis where overloaded iron is deposited in tissues and organs (symptoms being liver damage (cirrhosis) and joint pain), was this the root of both my spine pain and liver issues?
If so, did supplementing ferrous gluconate for the low ferritin cause it? And when levels reached normal and the dosage was reduced, did that play into the reversal?
After identifying that I do carry the three (HFE) gene variants with double alleles and seeing that the timeline matches, I suspect it did, but want your thoughts since you live with Hepatology, and I may not have a full understanding of the mechanism. Any insight is much appreciated.
This is one for the haematologist.
Very difficult to answer as the haemochromotosis was captured relatively early 33 years old for me and in response to blood tests for other symptoms. My liver function is not as good as I would expect for someone who hasn’t drank any alcohol for over 8 years and suspect it is as a result of some cirrhosis from an enthusiastic period from 18 to 30 years of age. So no particular symptoms that in hindsight would be put down to harmochromotosis specifically. The only thing was that I did tend to get asked if I had been on holiday during the winter season as I looked tanned for no reason (know it was my haemo now).
A bit different for women as menstruation cycle will obviously have an impact as well as if you were / are a regular blood donor.
I can’t remember my ferritin levels for this quarter as the test was sent back with not enough information and I continued to give blood as usual.
If you think that you have the condition I would stop iron supplementation and re baseline blood work to understand where you are now and then plan mgmt approach.
My biggest problem was that a lot of the symptoms also were similar to MS so just out things down to it and I was doing what I could to manage the haemo hence ignoring further investigation
Common symptoms from NHS uk include:
feeling very tired all the time (fatigue)
weight loss
weakness
joint pain
an inability to get or maintain an erection (erectile dysfunction)
irregular periods or stopped or missed periods
Brain fog, mood swings, depression and anxiety
Ana, thank you. Round #4 today of IVIG, to slow it down? Or perhaps help? CT scan showed problem muscles not working this week. PtFis 10%
Sending good thoughts for improvements!
I just looked up “hemochromatosis” and the symptoms are dead on to what I have experienced. I’ll read up on it, but I’m curious how you tested for this and what you do to treat?
There is a genetic test for it. My mother also has it but my twin sister doesn’t have haemochromotosis. Just me with MS. It was identified after investigation into numbness and tingling down my left hand side of my body. (30 years old) elevated iron levels were the only abnormal thing and no mri taken. This was in 2008 so maybe the watch and see approach from the neurologist as otherwise all other things seemed normal. Although in hindsight if he had asked, sexual function had fallen off a cliff and clonus in my ankles started being noticeable. As well as some random eye things like floaters in my vision. 2 years previous I had some eye issues and optic neuritis 🤔 they found some inflammation of the optic nerves (I was 28 years old and working in a very stressful job at the time) and it was put down to stress mri unremarkable I believe.
Meant to say. Once test confirmed haemochromotosis I then gave a unit of blood (a pint) every week for about 6 months and then every couple of weeks and then every month for a few years. Now 16 years later I give blood every 3 months to keep ferritin levels in the adult male normal range. This is getting increasingly harder as I have good veins but they are now very scarred so getting the needle in and blood flowing is more difficult.
Jackpot again. I have double alleles of each of the mutant variants.
Lucky me. Well, actually yes, lucky me that you commented, so I can now dig into this. Also, Lucky that while double Allele for each mutant variant, I'm only double "AA" on rs1800730 so only affected by a mild form of hemochromatosis. I'm guessing you have AA on the others which explains the required blood draws. :(
In case anyone else uses a service for Genetic mapping and wants to look them up...
The human Hemochromatosis Protein (HFE) gene Variants are:
C282Y, H63D and S65C mutations which are associated with type 1 haemochromatosis. The RS numbers to search for in your DNA:
rs1800562
rs1799945
rs1800730
Thanks again for the info... I now have some research work to do.
Not sure if good luck is the right phrase but definitely the sentiment 🤝
Two sets of H63D gene, a 5% chance of iron overload, but that is how mine was found. Blood came out thicker than pancake batter.
As someone with baby veins who distains IVs, I feel for you. :(
Thanks for sharing the info on how they tested for genetic markers. I had my complete DNA mapped to use to check for the MS variants (I won the unlucky jackpot!) and I use it to counter those variants with accurate supplementation, so I'll go and run a search on these: (from Google search on the markers) Finding two copies of the HFE link gene with the C282Y mutation confirms the diagnosis of primary hemochromatosis.
Ana, what accurate supplementation did you use. On a year trual of all the water soluble B vitamins, except for Biotin, as it effects endocrine tests. Was on high dose trial of Biotin, to lessen spasms and improve walking. But The Trial ended without great results.
I've been told that I should NOT give blood since the cause of MS is still unknown,
Yes, correct, unless taken by a Dr. Blood Mobile that ask for blood in USA, will not take blood if you have MS, nor if hereditary Hemochromatosis. Must be done in hospital, then they treat this iron rich blood as hazardous waste, instead of using it on someone who is anemic.
Hello. The blood I give is not suitable for donation since starting kesimpta so is binned. It is just a process for me to remove iron from my body.
Yes I agree, the quality of life.
Learned to accept this, as put on life support of oxygen 24*7 two years ago. Then on a machine that breaths for me, a bipap, hooked to oxygen at night. Ppms for ten years. Baclofen, botox injections keep me walking with a cane. A portable backpack for 02, to walk dogs. My PFT dropped to 10% this last test. Muscles in the chest lungs not working due to MS. No way found to fix or strengthen. Just diagnoised with a disease ontop of ms, 0.4% of 100,000 people get it, Multifocal motor neuropathy. Doing IVIG, but that does not fix lung muscles.
For you to have so much within just the 10-year window of your diagnosis is unimaginable. I hope IVIG helps. Sending all the good thoughts and energy your way.
Has anyone suggested Botox to you? I’ve had my first injections and go back in 6 weeks for the second round. My doc injects these in my hips, my ankles, my inner thighs, and my my quads. It relieves the violent spasms I was getting. It’s expensive; I won’t lie. But it’s either this or a baclofen pump for me. I also take clonazepam and tizanidine. My left leg (before all of this) was stuck in a 90 degree angle.
Your comment above strikes home because I really wanted to believe the Physio's claim that MS isn't causing my spine/pelvic displacement, that others have the same issue, and once it's corrected, I can put it behind me, but... an accident didn't cause my issues, chronic spasticity along my spine and hips did and will continue to do so for no reason, which is why chiropractic can often "reset" the misalignment but I've not been able to "hold" it.
When she said that, I just nodded, wanting to believe and happy enough to have finally found someone who could correctly diagnose and treat the "mechanics." I don't expect her to also have extensive knowledge or understanding of MS. Still, I wish...
I, like you, would prefer not to go down the Baclofen ramp-up rabbit hole, so if the Physio can get things in place and working again, Botox might be the best option to maintain it. You mentioned your doc is the one doing the injections, is this your neuro? GP? Or did you find someone specialized with MS using this as a treatment?
I get all my MS care from the University of Texas Southwestern University UTSW. The doctor who performed my Botox injections (see attachment) told me that if Botox didn’t help enough, he could give me baclofen injections and he said they manage hundreds of baclofen pumps. He works in rehabilitation.
Lisa, thanks so much for the information. I'm going to discuss Botox with both my Neuro and the new Physiotherapist I just started seeing. If it's not available here, I'll look into your guy at Parkland Hospital. Again, much appreciated.
I’m unable to attach the photo but here is his info: Dr. John Thottokara, a specialist in neurological rehabilitation. He is chief of the physical medicine and rehabilitation service at Parkland Hospital, under UTSW. This is an MS specialty clinic.
Dr. Thottokara is a neurologist but he is not my main doctor. I see a different neurologist and /or his APRN.
Great post thanks Prof G. I have significant spasticity, walking sometimes with a cane, but also still riding a bike - woohooo! On baclofen 20mg 3x a day and gabapentin 300mg 3x a day. Working ok - sedation is somewhat of an issue but not serious. Will consider cognitive function - tho not impeding my work. Hoping Ocrevus continues to slow worsening function. 🙏🏼
Micheal, yes on four twenty mg baclofen, six 600mg gabapentin, three 600 mg Lyrica (name brand, as generics did not work) use Nuvigil or Provigil to create alertness from the Cog Fog, or Baclofen Zombie. Just did IVIG infusion for rare Multi Multifunction Neuropathy they found ten years into PPMS by blood test.
But my muscles that control breathing, Drs thought it was neuromuscular weakness. Still no way to repair. Anybody have thoughts? Been on life support of oxygen 24x7 and a bipap that breaths for me at night.
Wow JoeY that sure is tough. Of course your doctors and pharmacists are best placed to help you. The only thing I could suggest you talk with them about is CBD as an alternative for managing spasticity? Might be less sedating. Wishing you the best care Joey
I find the whole discussion surrounding spasticity difficult in terms of knowing you “got it” and therefore seeking a method to treat it. Back in the 90’s with early relapses, there was a period of perhaps a year when my legs were very stiff. And I’ve never been able to run since. The legs became more naturally flexible over time, but it wasn’t for another 6 or so years that I started having “clonus”, or muscle contractions at repeated frequency. That has since always come and gone with various factors, especially use, level of fatigue, time of day and sensations of any kind. Reflexes have increased. The toe goes up because of a contraction, the nail hits the top of the sneaker and is sore after this continues, then the pain causes more intense contractions, and around and around we go. The average amount of time between contractions is 17 seconds, but you can count it off and see which way you are headed (at the moment) - maybe they are increasing or decreasing (then I can decide to take a med if I want).
I use baclofen usually, at night (20 mg as needed) because it makes me drowsy. Maybe it also controls the clonus? When I really want to sleep well, I use the Clonazepam .5 mg. That’s all highly variable. Some nights I’ll take nothing, others when the clonus ramps up, I’ll take 20 mg. twice. I’ll save the Clonazepam for Fri and Sat nights, because I need my best rest for Sat and Sun when I’m out at flea market grounds doing stuff. The Clonazepam for me was a “miracle drug” when it stopped tremors I was having, again, back in the 90’s.
My best guess is that the original relapse changed my muscle function (R leg) a bit, which over time (20 years) caused my arch to collapse a bit (they’ve always been flat). That was a very painful 3 year period where once again, no one could define what was going on and I really had to force myself to walk, but I did. Was it spasticity, or PTTD (collapsed arch) , neuropathy, nerve inflammation, foot drop, out toeing, (I could go on with all the diagnoses that were suggested).
A small personal massager worked great. Don’t forget ice works! I used a compounded med for 2 of the 3 years until things got better; how much did it work?: cyclobebenzaprine, norontin, baclofen and elavil, with the idea of avoiding the zombie effect as it was rubbed in, not ingested.
I wonder, had I done some minor adjustments in the beginning (1995) could I have avoided anything? That is the advice I can give. Check things out as best you can early on when they are (whatever they are), more simple. I get around with a cane when I’m out now, much slower than before. I’m 65 now. Good luck everyone. :-)
Your big toe going up is a classic symptom of MS, called Babinski’s. During a neuro exam, the doctor will gently scrape the bottom of your foot. People without MS will see their big toes curl down. People with MS will experience the toe rising. It’s a reflex. I believe infants toes behave like an MS patient, but as they grow, their toes curl down (not sure what age).
I have a prescription cream as you describe that originally was for my back (from a compounding pharmacy),
Thank you for your reply, Lisa.. Yes, I’m familiar with the Babinski term. However the point I make is the difficulty in distinguishing a clear “diagnosis” of “spasticity”, and then specifically what to do about it. I get leg spasms wherein the peronial muscle gets tight and the toe goes up. You can force it not to go up, but it’s a conscious effort and not particularly easy. Not painful in and of itself, just disruptive. But when the toe goes up during these spasms and you’re not busy controlling it, the upward hitting of the sneakers by the toe (over time) causes pain. The pain causes more frequent spasms and you can follow the repetition increasing or decreasing by counting it off in seconds. It’s a vicious circle. My comment is, is this spasticity and what can be done about it? Clonus is a good descriptor. Then I list some things I’ve tried. Taking sneakers off will help too; keeping nails trimmed etc., but you can’t permanently keep it from returning (usually when you don’t want to be disturbed). And I have to be put to sleep for MRIs, ("motion artifact") which are not as important as they used to be.
Tom A, good description. A new word for me today. Baclofen tablets, eight 10mg tablets. Found they wore off every three to four hours. Take 40 mg at night to get me thru night, now 20 in morning, 20 afternoon, and 40mg at bed. Botox injections are now at double the amount suggested, a test subject. They only last 50 days, but in usa, can only obtain every three months. Neck, back left, shoulders, arm, thighs, calves,
front top muscles, names of deep muscles, and other muscle names roll off neurologist toung, as he teaches another Dr.
A Old time Neurologist had me try a Tablespoon of Mustard. They do not know why that stops muscle spasms when ate. He also let me make my own quinine, as only in Tonic water, but not enough mg to stop muscles.
Quinine Works, but before you make, go over recipe with Dr.
I''ve never found Baclofen to do anything worthy in terms of leg stiffness, clonus, cramps, anything that pretends to get my legs (especially R) back functioning normal. I can manage short distances and moderate activity for a while, outside. As a matter of fact, I don't remember what it was like not to have to think about that before heading out. Baclofen is a great sleep aid, better than the stuff you get over the counter in the store with less side effects (for me). Does Bac work as a sleep aid by stopping stuff that otherwise would wake me up? Perhaps, don't think so; not going to design my own study! Am curious about the baclofen pump, but all I read (like here) says spasticity needs to be pretty severe first, which I guess I'm not at. If getting about becomes difficult without a chair, might give botox a look-see. Thanks for the reply and info.
Would be scared of botched surgery for baclofen pump, or complications. Have read to many blogs on the down sides. Some good, but others tragic. Yes, I take 1/2 of miy baclofen at night. Think it keeps cramps from awakening me up. What do you use instead?
Are your “cramps” painful in the leg muscles? I get “clonus”- apparently a specific definition of spasms, on average every 17 seconds give or take, when they occur. And they are not painful, but a disturbance (an annoyance). I might wake up, lay there and (for whatever reason, sometimes annoyances- pick any- noise, wife rolling over) the clonus starts up. If there’s a couple more hours I could sleep and I have nothing to do, I’ll take a 20 mg baclofen. Otherwise, to your question, I have previously taken nothing. The clonus is an MS consequence. Sore toe which contributes to clonus, PTTD (look that one up), flat feet from birth, and perhaps spraining my ankle when I fell 4 years ago, are not MS. Put it all together and it’s a confusing mess. Baclofen helps get me back to sleep. Why? ??? don’t know. So it’s not a routine treatment. Thought maybe, “get a pump” and see what happens, but it seems pretty complicated and a burden in itself. But they do give you some kind of preliminary trial to see if it would work. I’ll ask the new doc; see what he thinks.
I don’t give much credence to blog descriptions. I’m much more of a believer in scientific method, double blinded studies, etc. With MS, it is much too easy to let your hopes and beliefs influence your observations.
I think if you’re having to use a wheelchair (as I am), because of spasticity, definitely discuss a pump AND Botox. For me, oral baclofen is useless. I had a pump that, at the time, was inappropriate for me. It’s a very long story but chalk it up to a terrible neurologist I had at the time. I got it removed in 2017. I’m reluctant to do it again because: you have to get them replaced every 5-7 years, so surgery by a neurosurgeon probably every 5 years. Once you have the pump, you have to get it filled and then refilled periodically, you have to get it titrated so the dose is right for you. So I know they work very well for some people; my past experience has definitely jaded me, so do talk to your doctor about it. Medtronic is the company that made the one I had. I’m willing to bet that they still have videos on YouTube about it, and they may still have a video of the surgery itself. They had a nurse from the company in my surgery and if you get one, I imagine they still do that. They know things that the surgeon may not.
I just checked out YouTube-I put in Medtronic baclofen pump and all kinds of stuff popped up. The trade name for baclofen is Lioresol so be aware of that too.
I’ll rewrite my reply in the morning. Not sure what the latest iPhone update did but it just erased everything I had written. More tomorrow.
I’ve had success with the Neubie neuromuscular stimulation machine to control spasticity. The Neubie by the company Neufit offers neuromuscular stimulation with a DC (instead of AC). It offers Frequency Specific Micro current. Essentially, FSM is based around the idea of bio-resonance. All living cells give off certain frequencies unique to their type, location, structure, and function within the living system and these frequencies change when cells are under certain stressors. So, it is thought that certain specific frequencies can have a profound effect on tissues and conditions when they combine and intersect a certain way.
“Microcurrent” - Meaning very low intensity, subsensory. I’ve used it to calm spasms in my QL’s in the lower back and in my quads and hamstrings. I combined the Neubie with something called the EES (energy enhancement system) which is a combo of scalar and other types of energy. There is a more detailed explanation here https://eesystem.com/what-is-ee-system/
These are both extremely “alternative” methods of treatment that are completely dismissed by Dr.’s and insurance companies but for me, incredibly effective with no side effects. Expensive of course because they are both out of pocket and not covered by any kind of assistance.
So interesting - thanks for sharing this. I'm going to look it up and see if it's something I may be able to utilize.
I would love to try this but it is US only at the moment.
The EES systems are available internationally. You can look for a place near you on that web site
Thanks yes there is one in London I will give it a try. Thanks.
This is the first winter the stiffness has really affected my mobility so my Neurophysio has suggested I try an Exopulse Mollii Suit - https://www.ottobock.com/en-ex/exopulse-b2c
They are seeing some amazing results with MS patients who have tried it so far so can't wait for my trial in the new year.
I have that on my list to try. They are costly though.
I asked my doc about this just yesterday, & he was completely dismissive and said he’d never heard of it. Sigh.
Unfortunately some of them are so far behind. I have an FES (which has been amazing for my foot drop), my neuro said he’d never seen one before. How are they meant to give advice if they don’t even keep up with these things😩
You've picked on a topic that I feel I have had a lot of experience with. I found Baclofen intolerable, even tiny 5mg doses caused severe belching and gut discomfort. I did take 2x25mg of Dantrium daily for eight years. I came off that because the manufacturer was unable to supply it and a different manufacturers product arrived just as I developed a staphylococcus infection. I incorrectly blamed the change in medication but now, having stopped, I find it difficult to resume. I've also had many Botox injections.
Although I was diagnosed in 1994, I didn't need any treatment until after a bad attack in 2014. Initially, Botox was applied to my medial hamstrings and gastrocnemius, and that was enough.
I didn't find the hospital's physios were any good at all and their hydrotherapy sessions just meant standing aimlessly in water. What did work for me was 3 sessions a week of pilates with good instructors, massage from good remedial masseurs and dry needling.
In my experience a good Pilates instructor runs rings around a physio. Traditionally trained physios seem incapable of understanding how upper motor neuron damage differs from peripheral injury. Nonetheless, all was good until Covid meant a two year disruption in Melbourne of all the services I used (Pilates, Dry needling and massage). Even seeing a neurologist was practically impossible. After our lockdown my body really suffered from the lack of opportunity to move. I had lost dorsiflexion in my left foot, and that, in turn, threw my back out and my toes also started to ferociously curl.
After an 8 year break, I went back to the physios who had done the original botox. This is when I became aware of their 'cookie cutter' approach to treatment. When I saw them I said "can you Botox my flexor digitorum longus and brevis to uncurl my toes". They were desperate to botox my medial hamstrings. Ignoring them I took off my shoes and socks to show them the contractions in my toes so they reluctantly agreed to do what I wanted . After the requisite period, my walking speed had increased 50% and I had some dorsiflexion and better foot eversion. I did ask if they could do it again, as I felt it wasn't completely fixed. Instead they botoxed the medial hamstrings and ignored the lower leg. They might as well have shot me with an elephant gun. On reflection, they should have noticed I had a lateral tilt in my pelvis and that created the illusion of tight hamstrings. As the hamstrings weren't really that tight at all, they had taken away my ability to use my upper leg whilst my lower leg was still a source of problems.
They never looked at things like the tilt of the pelvis, whether my peroneals were tight, whether my tibilais posterior was inhibiting my tibilias anterior and whether my toe curling had resolved.
All they did was timed walking tests, took measurements of the angle of my hip, knee and ankle and asked "what are your goals". I didn't say what I wanted to say about that!
I gave them one more go, asking it they could again do the flexor digitorum longus and brevis as well as the tibialis posterior. Instead they injected the gastocnemius and the soleus. And again, I was crippled, especially by curling toes. When I went back, they saw how i walked and said" the Botox isn't working, why don't you take a card on the way out so you know where to call if you need us. If that's not gaslighting, I don't know what is.
After a year, I found an different doctor who was also a specialist in Botox. She was nonplussed by their approach. So far, I'm happy with her but still have a way to go.
The bottom line of all this is physios aren't as good as real pilates instructors, not all botox doctors are as good as they say they are, dry needling and massage are not luxuries, they are necessities
and the patient needs to have a way of learning what muscles are involved in both flexion and extension so they can join the conversation.
In terms of spasms down the legs, why don't you treat the patient as though the condition is periformis syndrome? I used to get monster spasms but since my periformis was injected with cortisone I haven't had any in years. It will work if the needle penetrates the muscle and breaks up the fascia. Just drizzling cortisone over the membrane won't do more than create sciatic palsy.
Yaaaas to all of this! For me, weights and strength training are the essential miracle workers, plus HITT cardio. I do use physical therapy to monitor and help adjust overcompensation since my one side is much weaker, but having used several different therapists, I agree with you, cookie-cutter approach that often can do more damage. After two different centers with 6 weeks at each, I still ended up with discectomy surgery. And while the surgery relieved the one herniated/sequestered discs at C5-S1 that pinched sciatica, it caused nerve damage on the other side, so I'm at my wits end. My pelvic is also tipped and they always cite "tight hamstrings", but it's the loss of trunk and right glute activation to hold a proper alignment that is my issue. I'd be interested in learning more on your Botox experience if you're willing to share?
Of course, ask away. My guess that the reason your pelvis is tilted is you hike your hip so your foot on the high side clears the floor. The consequence of that will be pain in the trunk of the opposite side. In very simple terms, you need to level your hips. That means exercises that lengthen the lateral muscles on your trunk and exercises that focus on the 'infamous' core muscles. That is Pilates strong suit. To activate your glute, your foot needs to land on the heel and then roll through the plantar so you reach a point where your weight rests on the first joint of the big toe. That's the point that activates the glute when walking. If you land on the ball of the foot, or on the outside of the foot, it won't be activated.
Can I hire you :D You nailed it... I've always had an anterior pelvic tilt, but it's worse now. Plus, when I walk, both feet roll outward in supination which is not new, but what is, is how the foot just slaps at the ground and the hip won't stay in alignment even after a chiropractic alignment. My right hip gave me issues long before the discectomy surgery which addressed the c5-s1 that blew out toward my left side, but now it's worse. I'm desperate to correct it to avoid another surgery. I'm making notes on what you've said for the PT, and I'll be looking at adding Pilates. What would you recommend for botox? How might that help? Again, thanks. Appreciate the chat.
Hi, Before you try the botox path see a good remedial masseur. Get him or her to work down through your back along a group called the erector spinae. Then go down the leg looking for tight spots. At any time that massage hurts yell out "what's the name of that muscle?". That's the only way you can build up a picture of what's tight. The tight muscles will dictate what other muscles will be switched off. A floppy foot can mean the main dorsiflexor is turned off, so you would look for tightness in the tibialis posterior. It could also mean the plantarflexors are too active, so you would look for tightness in the gastrocnemius and the soleus (or the peroneals). I'd then be adding in pilates in a studio that has all the equipment, not just a room full of reformers. On the reformer, I'd be doing a series called leg and footwork. I'd also be doing exercises that look at spinal articulation (i.e you need to be able to move your spine one vertebrae at a time, rather than move like a rigid block). I'd also be doing exercises that have an element of rotation. When we walk, there is a little bit of rotation going on. We don't walk robot-like in straight lines. Your leg doesn't start at the hip, there is a big muscle called the psoas in your torso that acts like a pulley to lift your leg. A pilates instructor knows how to isolate and challenge that. Good pilates instructors work by the motto "do no harm". Don't let them be too timid with you. When your technique is sorted out, work a little harder. There is a safety system built into muscle circuits called the 1b afferent fiber. It will override the signal that tightens the muscle, creating a relaxation phase. Working a little harder can trigger that but don't rush into doing it or you will hurt yourself. A safer way is to find someone who can do PNF stretches on you. Sometimes on a sporting field you will see physios doing PNF stretches when an athlete warms up. Botox is an add-on after you try those other things. I know lot of people like to think of themselves as warriors. Unfortunately most warriors end up dead. Be an elite athlete instead. You want a team of trained trainers who want you operating a peak level. Always give them feedback but make sure you are in charge.
Such great information Andrew – super appreciated! And you made me laugh at, “I know a lot of people like to think of themselves as warriors,” because, hello, I guess we’ve met. lol.
I was diagnosed and quickly wheelchair bound in 2009 at the age of thirty-eight being told the damage was too extensive to recoup. By 2012, I not only was walking, but earned my Black Belt in Shorei Goju and won both the PKC National title in karate forms here in the States, and the ISKA Disney/ESPN international title.
Although I never did return to baseline, and the MS and symptoms never did “go away” The disciplined diet (then Swank) and consistent workouts with a qualified trainer made all the difference. I was in the best shape of my life through my forties even with the MS. The turnabout, and the fact I remained relapse free according to my MRIs shocked my neurologist. However, he did not believe the diet and exercise had anything to do with it, and instead, claimed I had “isolated syndrome.”
Although I didn’t believe either of his claims, words have power, and over time my discipline slacked. And over time, my not so “isolated” MS progressed. The last handful of years it has really gotten away from me. So now, at fifty-two, (just as the entire MS world has fully acknowledged the impact of diet and exercise) I’m fighting to get ahead of it again, but it’s winning. Returning to my wheelhouse, I started boxing early last year determined to get back on track, only to go too hard, thinking I could do all I could before, and ended up sequestering an already herniated disc. Surgery followed, then one setback after another. And here I am.
A long-winded way to circle back to your “warrior” point and say, I am jumping into Pilates, but will go slow, armed with all that you shared in mind. Again, much appreciated.
Be well,
Ana
I have a great Botox Neurologist Specializes in all the muscles. I have been doing botox for over ten years. Know it keeps me walking with a cane. Dr can roll off his toung the names of muscles, the deeper muscles. I receive botox from neck muscles, shoulder, arm, front upper muscles, to lower limbs of thighs, calves inside and out, one spot for foot drop. He was showing resident Dr at University of California, Sacramento USA, how deep some of the muscles were, and me keeping track of areas that spasm.
I am on maximum amount of Baclofen and also have found a Tablespoon of yellow Mustard eaten will stop spasms. Quinine also stops, but in usa, only sold in tonic water (gin and tonic). You can make your own from internet jeffery morgan recipe, but check with your Dr, so you do not overdo.
Tablespoon of yellow Mustard will stop spasms? Awesome...looking it up and will try. I believe you're in the States, right? If so, what is the name and location of your Botox Neurologist? Is he/she in Calif?
I have a friend who had this problem and she was outfitted with a kind of belt that helped lift her leg when she walked.
Brother has foot drop from MS. He uses a foot drop brace he bought off Amazon. Looks like it slips below bottom of foot and ankle.
I've heard of these devices but never tried. Do you recall the name?
I live in the U.S. and I’m surprised by so many of you who are unhappy with your physios (I think this is the same as what we call physical therapists?). The one I’ve been seeing for the past 4 years is expert. She’s certified in neurological disorders. She has me use a standing frame often since I’ve become so tight, I don’t ever stand properly on my own. I’m planning to buy my own once the supplier has a used one I can buy at a reasonable price (anew one is $6,000!). Do any of you use such a contraption? I’m puzzled by how differently spasticity seems to be treated in our two countries.
Hi Lisa, I'm in the States as well and thought a Physical Therapist and a Physiotherapist were the same but have found that while both aim to optimize movement and function to decrease pain, the approach and techniques are quite different.
Physical therapists (most common) use exercise and equipment to help patients recover whereas physiotherapists use manual massage techniques designed to manipulate and transform muscles, fascia, nerves, and joints.
I used to see a chiropractor who performed a type of "Active Release" and it was magic. He moved and I couldn't find anyone else who knew anything about it. In researching physiotherapists, I found they use this technique, so I'm sold. Took me a minute to locate a true physiotherapist in my location, but I did and am scheduled for next week. :) It's fantastic that you've found one as well.
In Australia, it's very clearly delineated. What I have noticed is the different professionals often have an undercurrent of dislike for each other's approach but you have to prod them to make them say it.
Here, physiotherapists rule the roost, myotherapists are undervalued and chiropractors think they are better than they are. Osteopaths think they have the answers. Remedial masseurs are at the bottom of the tree but a good one is pure gold.
When I went to Scotland a few years ago, I was surprised by how intimidated a physiotherapist was when I started naming the muscles. Later, I booked to see a physio in a medium sized city to get a release for my shoulder. He was about 50 years old. After a little while, I became suspicious so I asked him how long he had been doing massage. He answered " I was the gardener here until 6 months ago but I've always been interested in massage. So I decided it was now or never." If I'd known in advance, I would have given him a miss.
Later, I was in Italy and went to see a physiotherapist for some work on my legs. He was just a very average masseur, but the locals thought he was great. He called himself a physiotherapist but he would not have that title somewhere else in the world.
It's always worthwhile having a conversation with the person who is working on you so you learn something about them.
Andrew,
Just a quick note of sincere thanks for sharing your experience, insights, and info on physiotherapy. I finally found a physio-center here, and after a full biomechanical analysis, I finally have some real answers!
I have a locked Sacroiliac joint with a pelvic girdle misalignment pattern called “windswept ischium” which is caused by hip dislocation or subluxation, joint weakness, and/or contractures(spasticity). <-figures.
This caused my L5-S1 disc to herniate, requiring surgery, and it's the root cause of the chronic pain that started in 2019 and has progressively worsened. What's crazy is how many specialists I've seen over the last four years and how ALL of them missed it.
Lots of work ahead, but I can't tell you how relieved and grateful I am to finally be in the right hands. Thanks again.
Best,
Ana
Hi Ana, That's great news. Subject to what they do, Pilates can help with that. I dropped you a quick note on FB messenger (I hope it was you!) Let me know if you'd like a copy.
Regards, Andrew
LOL to the gardener turned Physio in 6 months. (But hey, we all have to start somewhere. Here's hoping he was maybe working the grounds to pay for schooling?) And agree we have to look into everyone's credentials before adding them to our care team. Blind faith in medical isn't a luxury for those with chronic illness.
Thanks very useful, I do not have spasticity but spasms and am using the same drug profile as described. These spasms are primarily violent painful ankle dorsiflexion and hip flexors, every 20 secs for hours, following the same circadian pattern as described. Any ideas for management?
Sounds as if someone with your type of symptoms needs medication. I suspect this person will have some say in which drug they choose. You will need to discuss this with your HCP.
My understanding is that spasms as you describe ARE spasticity. Mine started with my left leg rising on its own as I lay on my back. It got much worse from there.
This type of spasm is called a flexor spasm and is very different to an extensor spasm when the leg straightens. They are both indicative of involvement of the pyramidal or corticospinal tract but at different levels in the nervous system.
Thank you, Sir. I appreciate your explanation.
If it happens lying on your back, I presume sitting is not always comfortable. Try this, as it worked for me. - Get someone to either inject the periformis muscle with cortisone (but the needle must go into the muscle) or try botoxing it ( I haven't done that). After a few days get someone to work on the trigger point for the short head of the biceps femoris. I guarantee that will be uncomfortable!
The reason is the sciatic nerve passes either under or through the periformis muscle. If it's squeezed, it will create cramps down the leg. The sciatic nerve divides just above the knee into the tibial nerve and the peroneal nerve. The only muscle enervated by the peroneal nerve above the knee is the short head of the biceps femoris. That muscle, in turn passes below the knee and interacts with muscles on the outside of your calf, which are all plantarflexors (pushing your foot down). Might help. It's very local, whereas the drugs are systemic.
I actually have gotten Botox once and am scheduled for the second round in about 6 weeks. It helps although doc wants to use more next time. I worried it would hurt (big needles), but it wasn’t bad at all. Doc said it’s because there are fewer nerves there than, say, your face if you got it for cosmetic reasons. It went pretty quickly. I asked what would happen if it stopped working and he said he would switch to injections of baclofen. So that, too, is an option.
I didn't know they did injections of baclofen. Did you find the botex helped?
It seems to me that we have the same symptoms. Sativex helped me for a few years, but the effect wore off. I then self-medicated with benzodiazepines with the help of my GP because the neurologists had no plan (unfortunately they still don't) and in the meantime I had serious adductor problems. I stopped taking the benzodiazepines after a year for obvious reasons. Then I gave myself the wrong diagnosis: RLS, but was given the right medication. I know Prof G hates pramipexole, but for me it was rescue in extremis. It's not perfect and the symptoms are now horrible if I forgot a tablet, and that scares me. At least it doesn't sedate me and has no effect on my muscle tone. What else can I do? As I said, the neurologists don't have a plan. I don't have any stiffness in my extremities, so no spasticity, but it's not RLS either - they say ...
Look up baclofen pump on the internet but also on YouTube. Medtronic is a (the only?) maker & they have a lot of videos explaining it.
It’s very unfortunate that the NHS is so anti-THC. THC helped me wean off of 3600mg/daily of gabapentin in 2019 after HSCT.
I'm secondary progressive but relatively benign and luckily haven't needed anti-spasmodics regularly. This summer though my lumbar spine seems to have thrown in the towel and I suspect surgery is in my near future. There is nerve root compression, spondylosis, severe spinal stenosis. Basically: a big ouchie.
For the pain and muscle spasms I'm now on pregabalin, tizanidine, tramadol and paracetamol which is three times more meds than I'd normally go to for pain but this is brutal and still breaking through nastily at times, so needs must. I'd only used tizanidine before for MS spasticity (and paracetamol for pain, obviously).
I find the zombie effect unpredictable; sometimes I will be out for the count a whole morning or afternoon; at others I will be 'high', a tad over-relaxed but stay awake. There are times when it doesn't seem to affect me at all, though I realise it must at some level. Tizanidine is the most sedating but has the shortest-lasting effect in that direction. This particular mix has been prescribed by my GP; my neurologist has never offered sativex and when asked about it (a while back) commented that it would make me a zombie sat on the sofa all day, which is EXACTLY where I am right now on the current cocktail but I do wonder, would it?
One odd thing I have noticed is that one of these drugs - I'm guessing Tizanidine - messes with my ability to swallow. After a few scary episodes of coughing/choking/stuff going down 'the wrong way', I now eat before I take it, or at least three or four hours afterwards. Also, typing on my laptop can be an adventure. I'm sometimes looking RIGHT AT that key but can I steer my finger to it?
When I first started to get these spine-related symptoms back in the spring I assumed they were an 'MS thing' but as things developed and worsened I knew they weren't; I've had MS over forty years and know how 'mine' behaves. The GP who knew me best believed me, took me seriously, did blood tests and sent me for x-rays and MRIs but the three others in the practice I saw first, in turn, apparently didn't. When I asked one for better pain relief she looked at me as if she thought I wanted something to sell outside a pub on a Friday night. My 'good' GP - both face to face and in various phone conversations - repeatedly told me that if I lost control of bladder or bowels that I was to go straight to A&E as a matter of urgency, so when I woke up cold one Saturday morning and realised I had thoroughly wet the bed (something that had never happened before with MS) I went off to my local hospital like a good girl, scared witless.
Now, I know it was a Saturday but they booked me in under the wrong thing ('generalised weakness' - what the heck even is that?!), took some blood then chucked me out in the waiting room for four hours. Then a doctor came out waving her arms and saying over and over again 'MS, MS, history of MS, chronic problem, MS, not acute, MS' whatever my question or symptom. We won't know anything until you have the MRI, says she. Back I go out in the waiting room for another three hours 'waiting for the blood results'. When we got those they were normal, so I was discharged home (with a discharge note bearing virtually no relation to the conversation that took place nor the problems I was having and that they were new). I'd had no meds all day so was not feeling great and this unwilling to listen to me and the willingness to assume my problems were MS relating was humiliating.
Whether connected or not we - that's me and my 'good' GP - then had a heck of a job getting the right bits MRI scanned. My GP, in consultation with my neurologist, had asked for a full cord MRI with contrast but when my appointment letter came back it was for head, cervical, thoracic spine. We made about twelve phone calls between us and my GP sent two or three emails to get them to scan my lumbar spine (we knew there was an issue there as part was visible on x-ray). It turned out that the consultant radiologist, seeing my history but not actually me or discussing it with my doctor or neurologist - had decided that it was 'more appropriate' to scan for MS as it was 'more likely'. I was all for having a full scan for MS as well as I'd not had one since 2017, but they REALLY needed to look at the lumbar spine... Eventually we managed to persuade them, amidst dire threats of 'You'll have to be in the machine another twenty minutes!', to do the whole thing, brain to bum, so to speak.
As it turned out by the time I was 'in the machine' I'd got a lot worse and was unable to tolerate longer than about twenty minutes on the MRI scanner's bed at a time (I haven't been able to lay down flat in my own bed for about three months). So, we have done the lumbar; we have done the head, in two separate appointments but we still haven't done the bit in the middle. Normally if I have a new issue which I suspect is MS related I get told 'You can't blame everything on that' and get sent off pronto for other tests or to other departments but this time it was absolutely the opposite way round.
Very frustrating. I'm so grateful for the NHS but when you hit walls like this when you need them to listen, it is frightening.
I recently attended A&E because I lost movement in my arm and leg on right side and had a fever. All the dr wrote in my notes was numbness/tingling, of which I had neither. Urine dip test was negative but uti was written in my notes. No mention of the cellulitis on my leg was made!
Previous visit was with a broken ankle, dr said it wasn't even sprained. Had to get a second opinion. Hospitals can be scary places.
What an ordeal! I'm so sorry you went through that and frustrated that the "you can't blame it on MS" BS is so common. MS affects everything, and everything affects it. Have you found a solution?
Great post thank you. I use sativex in addition to baclofen which has allowed me to almost half my baclofen dose to 20/10/10, that has helped to reduce my fatigue levels. I use 4-5 sprays of sativex daily it has really reduced my spasms. In addition I have a motomed exercise bike (assisted peddling) that I use 3-4 times a week and I can definitely tell that helps too.
Physio (stretching and massage really) plus having a massage gun (small lightweight )help too
Need to reduce my baclofen dose if I ever have a temperature to avoid being like a rag doll.
I have PPMS and real problems with Spasticity. Baclofen did nothing for me. Stretching every day, infrared sauna, massage gun is very good, regular massage, weekly pilates all help. I tried loads of different types of CBD and got nothing until on the recommendation of my good friend Kev with PPMS Supreme CBD. It has made a real difference for me with my spasticity it has made it bearable. It is not cheap but I would recommend it. It has been a real game changer for Kev also. Keep up the good work Gavin.
I use baclogefen 10 mg 3 times/day .
I always adjust the dose listening to my body!
Physiotherapy helps a lot managing spasticity.
Empirically, I'd arrived at taking baclofen around 4am (regular wees ensure I wake up often) and reducing during waking hours. Recently, I'd gone up from 30 > 40mg/day but after reading your article, think I'll revert back and also go back to pill-cutting, for little & often. I'm stiffest first thing in the morning and mid-evening, so will emphasise dosage at 4am and 9pm.
Tried most of the oral drugs, with little to no success; pregabalin worked for about 3 weeks, then it didn’t. Strangely enough, using the Cionic sleeve for about 6 weeks lessened the spasms down to where I could sleep most of the night with only an occasional twitch. When I went for a month without the sleeve ( hardware problem), the spasms returned. I was only wearing the sleeve 4-6 hours a day. They just sent back my fix, and after a week- spasms are really minor again. Worked way better for me than pills and stretching.
Looking into that, thanks for sharing. And at $2,600 it's expensive... Do you find it substantially makes a difference in your gait, foot drop, and so on?