Speaking for myself, it would be nice to have some of the professionals come to me with things that could improve my life rather than me having to research them & ask the professionals to provide or obtain them for me. I was diagnosed RRMS in 94, SPMS 2014ish. No treatment for MS apart from symptomatic, none until Siponimod in 2021. Have had to ask for amantadine, modafinil, tizanidine, etc, etc. Still waiting, 4 years now for sativex. I often feel abandoned.
Diagnosis. I’ve heard and myself experienced years of testing before a Dr. finally diagnosed me. People are suffering greatly due to antiquated testing and retesting for MS. Next is pain. The pain caused by MS is often not acknowledged by doctors and advocates. Even your lists of symptoms skips right over it and undertreated/untreated pain is leading people to give up. I know people who have committed suicide due to ignorance of MS PAIN.
I am one of those people. It took 3 decades for me to get a proper Dx. This was due, in part, not only to doctors ignoring or blowing off symptoms, but also because I did not always have insurance coverage. In fact, I was under state Medicaid when I had a CT done after having a major cognitive episode. Why a CT? because state Medicaid did not want to pay for an MRI. The CT showed MANY lesions in my brain. Still no MRI. Because the state would not cover it. I had to wait 2 more years to start receiving Medicare benefits before I could finally get the MRI and ultimately get the Dx. Prior to this, even when I had insurance coverage, I got patronizing doctors that either werent listening or were just blowing me off. I had one even pat me on the head and tell me it was all gonna be ok as he was handing me a sample bottle of Lyrica. Yeah, it's that bad in Florida. I had searched for 3 decades to explain the pain and other symptoms that were being caused by MS that no one was paying attention to. They saw me as someone who wanted drugs (opioids) and nothing more. UGH
I’m so sorry and unfortunately your story is not uncommon.
The point you make about an all-in-one clinic approach to care is is so important and would resolve so many problems for us. Thank you for bringing it up. I think it also points to a larger problem of many doctors, not all, but too many who won’t talk to a patient’s other doctors or even check each other’s notes. I’ve asked my primary why doctors don’t communicate with each other about a given person and she said doctors are so overwhelmed by regulatory processes and paperwork that there’s just no time. She said she spends more time on paperwork than caring for patients. Imagine what could be accomplished if more whole care offices/clinics existed. As just one example, I was in extreme pain for eight months with my neuro telling me my spinal lesion was causing the pain. My primary thought it sounded like my gallbladder, but neither ordered tests to try to figure it out or checked each other’s notes. They just basically said, you have a chronic illness and are going to experience discomfort. Meanwhile this was vomit inducing pain, not discomfort. If I kept sticking it out and not gone to the ER, my gallbladder would have burst, the hospital nurse’s words, not mine and the surgeon said my gallbladder was loaded with stones that could have easily been seen if someone had just ordered a test. I get that healthcare needs to be regulated, but not to the point where doctors can’t talk to each other about a patient’s care because, as my primary told me, she’s up until 2 every night trying to dig out from under all the paperwork and can only spend 10 to 15 minutes hands on with a patient, if your lucky.
Karin and Christina, same experience. Why the blowing off of pain, I just do not understand. 2 years post cancer, I dropped 15 pounds in fewer than 2 months with gall bladder scans being “unequivocal”. And I knew the gastro personally! (“I don’t know what to tell you.”) What saved me was my cancer surgeon who did a scope and found a tumor the size of a gourd on my liver that blew out my gall bladder that required a hepatic resection. But Christina, your situation sounds so much more dangerous. Glad you are both here. 🌷
You must have been in such pain. I’m so very sorry. I would not say my situation was more dangerous at all. I am also glad you are here to tell the tale and thankful that your cancer surgeon took the time to actually get hands on.
I don’t know. Mine was a slog, with a lot of pain on trying to eat or drink. (The gastro actually gave me a copy of Remen’s Kitchen Table Wisdom, which is an excellent book, but wasn’t an answer!) What you went through sounds as though it could have been immediately fatal. Terrible mistreatment you went through! 💕
PAIN. Nerve pain is worse pain ever. I have had child birth pain, fractured coxic, broken bones, gallbladder pain, hysterectomy pain, heart attack pain, abcess in tooth pain, and non of them are anything like the pain i have right now. I am in bed at 05.21, because once again my bladder got me up for the 3rd time in night, so cant sleep as it has awakened the pain in my feet. the pain in my left foot which is weirdly supposed to be numb is like someone stabbing me with a large knife. the burning which surrounds the feet they are onfire, and the crazy painful tingling going up the left leg. i get 2mg diazepam for pain twice a day, i cant take other stuff as weirdly my body reacts badly to it.
so i am typing this trying to forget the pain. i tried sativex it made me spin out and feel sick and when i got up to use my commode instead of sitting on it i nearly ended up in it as it made me loose my balance. i had to stop taking it or fall badly and break a hip or something.
PAIN. the joys of it. mine is all from the waist down. mostly left side. i have had the large knife stuck in the front of my leg, literally screaming with the pain of it, suddenly whilst i am quiet on my recliner i will scream because i have been hit by a one off lightning bolt go through the underneath of my foot which travels up my leg. my toes will go into massive spasms you can see them almost standing to attention up right from the foot. YEP PAIN. if it wasnt for my little dog i would just curl up and join my husband. i cant eat much now either as my stomach cant cope with the food and doesnt push it down into the bowel so i end up in pain in the stomach, and when i do pass a motion its so huge it blocks the toilet lol. ah you got to laugh, i am 72 this year had a brilliant life, but it all stopped in 2000.
So true! My life stopped when I got trigeminal neuralgia-the worst pain ever. And I have a pain like someone would put an electric wire to my brain and then this signal goes to the part inside my nose. We are wondering why MS patients commit suicide. Because they cant stand the pain which they feel every single day :-( Sometimes I would like to die now to do not suffer longer...
I had TN once. brought on by the death of my MIL who i loved very much. Yes bad. I am blessed however, god gave me a high tolerance to pain, but then its a curse too as people dont realise how bad the pain is. Yesterday for the first time i felt like giving up, the pain in my foot was so bad, i wanted to scream and cry. I could have given up easily when my husband passed away 2017 we had been together for 30 years. I had lost my beloved mother in 2016. i had my little dog lucy who was with me through thick and thin, sadly i lost her last august 2 days after my 71 birthday, i wanted to curl up and die.
My daughters 49 and 51 were worried for me, and they suggested i got a little dog for company. i was against it, as to be honest i didnt care if i went to the big sleep at that point, then bella my rescue dog shih Tzu came into my life at 15. she was chipped as LUCKY, and the same age as my LUCY was exactly. i felt it was a sign so she came to live with me. yes she has health issues, deaf and has developed heart issues and sadly got lung cancer but she keeps going everyday the vets say she is a miracle. everyone loves her, she spreads joy to all who meet her. I truly think we should all have a dog or cat they are the best therepy ever. I have to get up to deal with her and care for her needs, i am not feeling sorry for myself anymore and we have a lovely quiet time living together.
All i can say is there are many forms of suffering in our lives, sometimes emotional pain can be harder to deal with then physical pain. i have friends with terrible cancers bone cancers one of the worse who never give up. I decided I am not going to let a disease be the reason i give up. the disease can not be more important to me then the loss of my husband or pet, it is a disease, nope when i go it will be on my terms. I now sponser young children in africa Kenya to school, every day they can get up and go to school and eat a meal. so i have focused on only doing good things. NOPE MS is what it is just a challenge to see how strong in heart and emotions we are. i will go to the big sleep and be with my husband again, but it will be on my terms.
big hugs Emilia, i feel your pain truly but there are reasons to fight i just look out of the window every day and see the birds hopping about eating seed off the ground, having a lovey cuddle from my bella. getting a little letter from Mercy in kenya telling me what a lovely time she is having learning her english. yep always something. xxxxxx
Now I am crying when I am reading your comment. It is true what you wrote. You have my full support! Great that you are doing these good things and that you find strenght inside. Honestly I dont think I will be living long. Simply this disease will end up with me pretty soon (if noone stops MS progression). But I am dealing with it, simply I dont want my son to watch how I suffer and I dont want to suffer long. People who pass suddenly and with no pain are so lucky! I had mono 3 years ago, I was infected by my son. Sometimes I am asking myself "what did I do wrong?" "I was only kissing my baby like every parent". Well life is unfair :-(
if you have a son you dont want your legacy to be when the going gets tough get going now do you? hold onto his love hun, there are no guarantees in life. i watched my beloved husband slowly leave me but i still kept going. i keep going so no one forgets him. life is tough always look on the positive side of life. if you feel depressed and unhappy talk to someone ok. you didnt do anything wrong, non of us do. i lost one of my friends who had MS for 30 years, she survived MS but the spinal cancer took her in the end. I mean really not content with RRMS she ended up with one of the worse cancers too. Look in the mirror and see yourself, and say I am here and god has given me a challenge he only does that to his strongest soldiers hunny. HUGS. xxx
Emilia and Zenda, I empathize with you both. We have such difficult bodies to live in. (TN is one of the all time world’s worst.) Even people I am or have been close to just do NOT get it. And that hurts too. Just in a different way.🌷
I understand that they dont want to get it as they are scared they may..........especially family.
Are you Italien? My mother was. xxxx stay strong. MY MOTTO IS "ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE". Dr GIOVANNONI needs us so he can help others with MS. if that makes any sense. xx
Dear Zenda, as the disease progressed, I think many old friends, colleagues and family did not want to give up how they “knew” me. As you say, at some level it scares them. I wonder if it forces them to confront their own mortality. My own spouse doesn’t get it and I have thrown my hands up (when I can!). Yes, I am all Italian and I miss good food! The “Italien” was a joke a friend sent showing “The Alien” and beside it, The Alien talking with its hands. Thus, “Italien”. A funny! I have tried never to lose my sense of humor. You, lovely woman, have gone through far too much for one person, and you are still with us and doing good things in the world. And yes, everything you say makes sense. Prof G needs us, we need him! Sending love your way.💕💕
I agree with confronting their own mortality. my mum my my father in the war in italy they got married, and well had 6 children I am one of them. a long story lol. I loved my mum dearly and my favorite memory was xmas when she would be drying the pasta on the bed for her famous lasagne. Brits cant make Italien sauce lol. i have my own blog too. led a great life. Would love to be on a trial or something on how MS affects us and what we all do too survive. I dont think we can private message on here. shame. i have a large italien family in italy spread all over. YEP A SENSE of humour is so important for us to have. lots of love, from an MS sister. xx
I agree. I am lucky that I managed to get sativex and it really helps with pain , it is very very mild so no weird feelings or side effects.but not. with stiffness or spasms unfortunately. I make cannabis cookies and half a cookies before bed ensures a good night sleep, but why can’t we have cannabis on prescription??
Pascal, I envy you that cannabis works for sleep! :) I have cerebellar involvement and it whacks me like a sledgehammer. I literally cannot move if I take it. I’m very happy for you. Cheers and happy sleeping!🌷
Truly integrated care for people with advancing disease. Like the ALS clinics in the US. Every MS center should have an infectious disease person, a psychiatrist, a urologist, a PT and OT person, a pulmonologist,... tired of coordinating all of the specialists myself
A treatment to stop the neuro-degeneration which leads to increasing disability (probably covered by your smouldering MS point). So an MSer at EDSS 4 (as an example) would get no worse. They would remain in employment, less stress on relationships, reduced need for neuro appointments / MS nurse visits, improved mental health etc.
More research on PPMS so that those of us with this can have some hope of a slowing (or even stopping) of progression. It would also be good if trials could be open to those over the age of 70 who are still relatively fit and have possibly 20-30 years of life left to live.
i have PPMS. started with ON in 2000 it took another 16 years to get diagnosis. i am 72 this year. I would love the social care workers and the councils to understand my needs. I need a home which is adapted (i know 4 in my sheltered complex all filled with non wheelchair tenants). I cant get out as the grounds are unsuitable i am a prisoner in my own home. My MS is moving forward to the end i reckon 2024. I have awful self isolation, no one understands. their idea is i go out and sit in a cafe and have a coffee and a cake. i cant sit down with my legs dangling the pain is unbearable, my back goes into spasms. i think trials of over 70 years is a good idea. at the moment i dont want another 20 years of life, not the way i am right now. i cant deal with much more of the ignorance of people who are supposed to care for us. PPMS is the forgotten MS.
In the UK, the serious under-staffing of MS departments in hospitals. The shortage of staff means very limited access specialist MS nurses and GPs are largely relatively ignorant of the needs of PwMS in my experience. Just someone to turn to for advice and help with symptoms would be a huge help.
Apr 27, 2023·edited Apr 27, 2023Liked by Gavin Giovannoni
1. Antivirals
2. Antivirals
3. Antivirals (I'm saving to buy some, which ones? 😁
4. Antivirals
5. Antivirals
6. Antivirals
7. Hepatitis b sounds nice, i bet Antivirals are nice.
8. Any kind of Antivirals will do.
9. Maybe I'll become a sex worker
10. No, but joke aside - also Steroids for relapses. I went through relapses during covid abd they wouldn't give me anything.
- Also GPs are very "its not ms, ms is rare" and happy to fob you off with b12 deficiency excuses when Its ABSOLUTELY urgent mri is needed.
- Also gps do not look at neurological symptoms dispersed in time to determine a need to refer for mri urgently - they dont think ok numb hands at todays visit but hang on this person had optic neuritis last year (!)
Dr. G, consider looking at FastGrants from Patrick Collison and Tyler Cowen (https://future.com/what-we-learned-doing-fast-grants/) if you are having trouble getting funding to do HAART studies into MS. They have a particular focus on funding trials of older, repurposed drugs (like generic Truvada) for new problems. I bet they could get you the 5-7 million you requested in an older post to run such a trial
FWIW, my primary care doctor was the one who thought I had multiple sclerosis, the 2 neurologists I saw later disagreed. 5 years later, I was diagnosed when I had optic neuritis.
And I agree, studies looking at how to treat the EBV virus that triggers MS would be my biggest request. If studies are not forthcoming, perhaps we can organize to get put on PrEP and pool our results.
My PPMS started with ON. it ended with ON. well the first VEP showed i had ON. then i had another one in 2015 VEP which showed active lesions in brain stem or whatever they call it between brain and optic nerves AGAIN worse. i had MRI with some lesions on spine, i didnt have relapses remission so therefore could have had MS. then the neurologist did research and realised i had PPMS. diagnosed 2016. I had EBV in 1999 and first symptom ON in 2000. dont give up get active and push. i went private for appointments and was dealt with differently. now my MS is on the downward spiral i am 72 this year. for 23 years i have had MS. oh i havent had antivirals lol, i did get covid IN HOSPITAL when i went in for heart issues for 3 weeks. they did another MRI at the time, and yep my MS was also not behaving itself lol.
My neurologist puts me at 7.5 on the EDSS scale (disablity scale).
7.5: You can’t take more than a few steps. You might need help getting in and out of a wheelchair. You can’t move yourself around in a non-motorized wheelchair for a full day
i try my best to stay mobile as much as i can but it is a few steps, sit rest etc. its getting harder i have to say, but i am 72 this year and i have friends without MS and well i have to say i am in better shape then they are. mainly its down to my strict healthy diet and keeping a weight of 9stones. I am 5" 8". I eat very good. no transfats, tons of fruit, fish and only chicken. salads and things i never eat fried food, it has to be fresh. fortified milk (coconut). My bloods are extremely good, no deficiets. my doctor said to me one day whats your secret lol. she hadnt seen such good bloods, although last year we had an issue with liver and other anomalies, it turned out to be medication for my heart condition i developed last march. very mild furring of an artery all sorted on 1 years meds. the liver was down to the statin they had me on. even my BP is good now.
I have never heard about the onset O.N. differential so perhaps i got the better option then after all. PPMS is quite often from O.N. My neurolgoist believes not enough of them do V.E.P. tests he swears by them. so thankfully he does as it showed i had MS where my MRI was showing lesions not enough for a diagnsosis, and of course PPMS is slow progressive anyway and can be different to onset RRMS as no remissions as such. I could write a book about my PPMS lol.
I was severely disabled by undiagnosed MS and was also told it was B12 deficiency. And depression. And chronic fatigue syndrome. For many years. All to save the NHS less than £200 for an MRI scan. Having optic neuritis made no difference for me either. I only got a diagnosis via Dr Google and going private, far too late 🤕
The same was in my case. You know how many psychologist said I am mentally sick? At least 3. And neurologist with 20 years of experience said its B12 deficiency. Funny...
Actually dr G diagnosed" me with ms selfie a few years before that - i kept googling "always tired even after sleeping" and I found ms selfie. I read.
I thought "naah NOT ME, the gp didnt seem concerned that its ms but these poor people with ms, this dr really is on the ball". I remember an irl dr talking about how the best older neuro professors in uni thought it was ebv virus behind ms.
But yes, gps really dont like dr google and for good reason. It complocates their 2m diagnosis based on absolutely no patient history and absolutely 0 interest in prevention.
I was fortunate that back in the days of ‘fund-holder’ GPs, my doctor offered to pay for an MRI rather than waiting for a neurologist to order one. I was also the other way round to you, my first symptom in 1990 was optic neuritis, it still took some time to get any confirmation.
What I find completely insane is that there is a cure but not many are willing to believe it- including the Neuros
Fifteen years ago I spent $40 000 USD on a MSC transplant done by Prof Slavin in Israel. At the time I’d had MS for 10 years, I had many issues, my left leg was unable to lift at all. And I was going downhill rapidly.
Within a month of the stem cell (not HSCT) I was running again.
My neurologist refused to acknowledge my improvement until five years later when I was still relapse free and my prior disabilities nearly all gone. He called me to find out more about the stem cell. But at 6 years post MSC I relapsed. MSC had gone up to over $100 000 USD so I did research and took lemtrada. Ten years since taking it I’ve been relapse free and pretty much every symptom is gone.
Many people and doctors know my story, I’ve been in the media, but still people get diagnosed with MS and are never offered these more effective treatments.
I consider myself now cured. At fifty I’ve taken up running again and can easily run 3 km in the tropics- heat is no longer an issue for me.
I tell everyone to do what I did and aggressively fight back but my advice seems to fall on deaf years and then I have to watch people I care about get sicker and sicker. Why???
I know some treatments are expensive, but so are wheelchairs and not being able to walk and modifying houses and cars.
It is said an MS patient is worth three million dollars to the health care system over a lifetime-does it not make more financial sense to use these proven, but perhaps initially costly treatments straight up?
INDEED! I spent 3 decades trying get a Dx.. then in my 50's finally got it and was offered Tecfidera. What? I was still walking and had relatively low disability but did have some. Now I am at 6.5 on the EDSS scale and it hasnt been 10 years since I was Dx'd. (2015). Thing is, If i had been offered the stem cell treatment when I was Dx'd, i would have jumped on it. Now I have more comorbidities.. COPD, CHF so not sure I would even be elegible.. notwith standing my age. I have heard that they wont consider anyone over 60 for this. So I missed my chance because I had such a long delay in Dx and now am just screwed. Currently active SPMS with more than 100 lesions in my brain and cervical spine
Treatment for those with paediatric MS. So few studies being done and it relies on getting a brave paediatric neurologist to offer high efficacy therapy early on. Plus this group need input for help with schooling, exams and psychological support and yet largely this is totally lacking.
There definitely needs to be more awareness raised for pediatric MS. It was very difficult to even get a correct diagnosis for my daughter. Her earliest symptoms at 8 yrs old did not seem strictly neurological, so I honestly don't fault the doctors for not recognizing it. However, for the next ten years, she was sent to so many different specialists and even hospitalized twice. They all examined her again and again, ran blood work over and over, and scanned nearly every part of her, with X-rays, CT scans, MRIs (not brain). She was even misdiagnosed with and treated for Juvenile Rheumatoid Arthritis (Methotrexate and Enbrel). She suffered many symptoms all throughout her childhood, but it wasn't until she was 18 and lost vision in her eye, that anyone thought to scan her brain. Did she have the lesions all along? We'll never know, I guess. But I would never wish that kind of journey on any little kid.
Knowledge, people should know more and understand that now it s different disease than 20 years ago (and I mean also neurologist - when I was in the hospital with my first relapse and half of my body was completely numb and even though I m also a doctor - but radiologist so neurology I only remember from uni classes, after 7 days of solumedrol my neurologist told me that now there is no chance that it will improve - two months later I feel like a totally healthy person)
High efficacy DMT even for young, stable and newly diagnosed (they wanted to give me dimethyl fumarate or interferon because I wasn’t sick enough (multiple lesions in MRI, present oligoclonal bands in CSF, and relapse) 🤦🏼♀️, so I wrote myself a prescription and paid for ofatumumab by myself but I m sure most of the people can’t afford it and they trust in everything what their doctor says
OMG! Yes! You have to advocate for yourself! Both ways. I am now 65 years old. Having a delay of 3 decades for diagnosis did not help my case at all. Now I have a neuro that is trying to bully me onto Ocrevus after having a horrible experience with Mayzent. I nearly died on Mayzent. One infection after another and my immune system basically tanked. I finally had to stop when I cracked a tooth and was being treated with 2000mg of penicillin a day for the abcess and my system was not responding to it. It was horrible. I am now on Aubagio. Its not as hard core and school is still out on how well it is working but I am not dealing with UTI's every 3 weeks, abcesses that do not respond to anti biotics, skin infections with every scrape and cut, Pneumonia hospitalization from a little cold that wont clear. Sometimes the doc has to back off and look at the whole picture which this doctor is not doing. She is seeing a hard case of SPMS and thats it. Not seeing ME as a patient with all my other stuff going on. There has to be some balance. If I was a young person, I would consider Ocrevus but not now. It's too much for my system.
Karin, I remember this when you (and Prof G) warned me about Mayzent. I am older, but do you feel Aubagio is working out for you? It sounds like it. Fingers crossed….🌷
In order, I would say flip the pyramid, antiviral trials for smouldering MS and symptomatic treatment. Like many here, at age 70, it took years to get a proper diagnosis. Then, just like that! I was “cured” with NEID according to a very prestigious medical facility here in the states! Within a few years, I was racing downhill in the proverbial hand basket diagnosed with SPMS. I have been fortunate at my age to have lucked into finding an empathic neurologist who believes that SPMS is real, despite NEID, and is aggressive at treating symptoms. I saw her last week and she said (I am serious) no wonder you can’t sleep. Your spasticity (and tremor) is so severe, I don’t know how you are living with this. I couldn’t! (Well, I don’t know how we live with this either…) She shot my back and neck contracture up with botox and ordered medication for sleep. (She wanted to order a sleep medication that could not be approved since I use valium for bladder issues. (Unfortunately, baclofen, which I took for so many years, caused severe aphasic problems, so valium is it.) I concur with those of us here who are older that trials for antivirals are extremely important, especially when we had delayed diagnoses or were denied the most effective DMTs early on. If I were young and had my life in front of me, I’d take the most effective DMT I could get my hands on. (Or get someone to put that IV in my vein!) I think I’ve shared previously that when I was on a high dose chemotherapy trial, the second phase of high doses of cyclophosphamide put me in complete remission from RRMS for several years although it wasn’t fun. Always, many thanks, Prof G. And much thanks the support on this site.🌷
😄👌Our greatest unmet need is the acknowledgment that neurology is in medieval times. Our donation is our bodies and we end up like Michael Jackson’s Thriller. So much medicine for nothing?
Apr 28, 2023·edited Apr 28, 2023Liked by Gavin Giovannoni
Thank you Prof G. For me the answer would have to be ‘early aggressive medication’ - this would have made a big difference to my condition. I too believe strongly in #4 - focussing on the marginal gains I can get and do get by practicing multiple lifestyle ‘enhancers’ - I wish others with MS knew these daily habits do help but unfortunately I / others only really start them when their MS is already advanced.
Speaking for myself, it would be nice to have some of the professionals come to me with things that could improve my life rather than me having to research them & ask the professionals to provide or obtain them for me. I was diagnosed RRMS in 94, SPMS 2014ish. No treatment for MS apart from symptomatic, none until Siponimod in 2021. Have had to ask for amantadine, modafinil, tizanidine, etc, etc. Still waiting, 4 years now for sativex. I often feel abandoned.
Diagnosis. I’ve heard and myself experienced years of testing before a Dr. finally diagnosed me. People are suffering greatly due to antiquated testing and retesting for MS. Next is pain. The pain caused by MS is often not acknowledged by doctors and advocates. Even your lists of symptoms skips right over it and undertreated/untreated pain is leading people to give up. I know people who have committed suicide due to ignorance of MS PAIN.
I am one of those people. It took 3 decades for me to get a proper Dx. This was due, in part, not only to doctors ignoring or blowing off symptoms, but also because I did not always have insurance coverage. In fact, I was under state Medicaid when I had a CT done after having a major cognitive episode. Why a CT? because state Medicaid did not want to pay for an MRI. The CT showed MANY lesions in my brain. Still no MRI. Because the state would not cover it. I had to wait 2 more years to start receiving Medicare benefits before I could finally get the MRI and ultimately get the Dx. Prior to this, even when I had insurance coverage, I got patronizing doctors that either werent listening or were just blowing me off. I had one even pat me on the head and tell me it was all gonna be ok as he was handing me a sample bottle of Lyrica. Yeah, it's that bad in Florida. I had searched for 3 decades to explain the pain and other symptoms that were being caused by MS that no one was paying attention to. They saw me as someone who wanted drugs (opioids) and nothing more. UGH
I’m so sorry and unfortunately your story is not uncommon.
The point you make about an all-in-one clinic approach to care is is so important and would resolve so many problems for us. Thank you for bringing it up. I think it also points to a larger problem of many doctors, not all, but too many who won’t talk to a patient’s other doctors or even check each other’s notes. I’ve asked my primary why doctors don’t communicate with each other about a given person and she said doctors are so overwhelmed by regulatory processes and paperwork that there’s just no time. She said she spends more time on paperwork than caring for patients. Imagine what could be accomplished if more whole care offices/clinics existed. As just one example, I was in extreme pain for eight months with my neuro telling me my spinal lesion was causing the pain. My primary thought it sounded like my gallbladder, but neither ordered tests to try to figure it out or checked each other’s notes. They just basically said, you have a chronic illness and are going to experience discomfort. Meanwhile this was vomit inducing pain, not discomfort. If I kept sticking it out and not gone to the ER, my gallbladder would have burst, the hospital nurse’s words, not mine and the surgeon said my gallbladder was loaded with stones that could have easily been seen if someone had just ordered a test. I get that healthcare needs to be regulated, but not to the point where doctors can’t talk to each other about a patient’s care because, as my primary told me, she’s up until 2 every night trying to dig out from under all the paperwork and can only spend 10 to 15 minutes hands on with a patient, if your lucky.
Karin and Christina, same experience. Why the blowing off of pain, I just do not understand. 2 years post cancer, I dropped 15 pounds in fewer than 2 months with gall bladder scans being “unequivocal”. And I knew the gastro personally! (“I don’t know what to tell you.”) What saved me was my cancer surgeon who did a scope and found a tumor the size of a gourd on my liver that blew out my gall bladder that required a hepatic resection. But Christina, your situation sounds so much more dangerous. Glad you are both here. 🌷
You must have been in such pain. I’m so very sorry. I would not say my situation was more dangerous at all. I am also glad you are here to tell the tale and thankful that your cancer surgeon took the time to actually get hands on.
I don’t know. Mine was a slog, with a lot of pain on trying to eat or drink. (The gastro actually gave me a copy of Remen’s Kitchen Table Wisdom, which is an excellent book, but wasn’t an answer!) What you went through sounds as though it could have been immediately fatal. Terrible mistreatment you went through! 💕
I'm so sorry that happened to you 🤕
PAIN. Nerve pain is worse pain ever. I have had child birth pain, fractured coxic, broken bones, gallbladder pain, hysterectomy pain, heart attack pain, abcess in tooth pain, and non of them are anything like the pain i have right now. I am in bed at 05.21, because once again my bladder got me up for the 3rd time in night, so cant sleep as it has awakened the pain in my feet. the pain in my left foot which is weirdly supposed to be numb is like someone stabbing me with a large knife. the burning which surrounds the feet they are onfire, and the crazy painful tingling going up the left leg. i get 2mg diazepam for pain twice a day, i cant take other stuff as weirdly my body reacts badly to it.
so i am typing this trying to forget the pain. i tried sativex it made me spin out and feel sick and when i got up to use my commode instead of sitting on it i nearly ended up in it as it made me loose my balance. i had to stop taking it or fall badly and break a hip or something.
PAIN. the joys of it. mine is all from the waist down. mostly left side. i have had the large knife stuck in the front of my leg, literally screaming with the pain of it, suddenly whilst i am quiet on my recliner i will scream because i have been hit by a one off lightning bolt go through the underneath of my foot which travels up my leg. my toes will go into massive spasms you can see them almost standing to attention up right from the foot. YEP PAIN. if it wasnt for my little dog i would just curl up and join my husband. i cant eat much now either as my stomach cant cope with the food and doesnt push it down into the bowel so i end up in pain in the stomach, and when i do pass a motion its so huge it blocks the toilet lol. ah you got to laugh, i am 72 this year had a brilliant life, but it all stopped in 2000.
So true! My life stopped when I got trigeminal neuralgia-the worst pain ever. And I have a pain like someone would put an electric wire to my brain and then this signal goes to the part inside my nose. We are wondering why MS patients commit suicide. Because they cant stand the pain which they feel every single day :-( Sometimes I would like to die now to do not suffer longer...
I had TN once. brought on by the death of my MIL who i loved very much. Yes bad. I am blessed however, god gave me a high tolerance to pain, but then its a curse too as people dont realise how bad the pain is. Yesterday for the first time i felt like giving up, the pain in my foot was so bad, i wanted to scream and cry. I could have given up easily when my husband passed away 2017 we had been together for 30 years. I had lost my beloved mother in 2016. i had my little dog lucy who was with me through thick and thin, sadly i lost her last august 2 days after my 71 birthday, i wanted to curl up and die.
My daughters 49 and 51 were worried for me, and they suggested i got a little dog for company. i was against it, as to be honest i didnt care if i went to the big sleep at that point, then bella my rescue dog shih Tzu came into my life at 15. she was chipped as LUCKY, and the same age as my LUCY was exactly. i felt it was a sign so she came to live with me. yes she has health issues, deaf and has developed heart issues and sadly got lung cancer but she keeps going everyday the vets say she is a miracle. everyone loves her, she spreads joy to all who meet her. I truly think we should all have a dog or cat they are the best therepy ever. I have to get up to deal with her and care for her needs, i am not feeling sorry for myself anymore and we have a lovely quiet time living together.
All i can say is there are many forms of suffering in our lives, sometimes emotional pain can be harder to deal with then physical pain. i have friends with terrible cancers bone cancers one of the worse who never give up. I decided I am not going to let a disease be the reason i give up. the disease can not be more important to me then the loss of my husband or pet, it is a disease, nope when i go it will be on my terms. I now sponser young children in africa Kenya to school, every day they can get up and go to school and eat a meal. so i have focused on only doing good things. NOPE MS is what it is just a challenge to see how strong in heart and emotions we are. i will go to the big sleep and be with my husband again, but it will be on my terms.
big hugs Emilia, i feel your pain truly but there are reasons to fight i just look out of the window every day and see the birds hopping about eating seed off the ground, having a lovey cuddle from my bella. getting a little letter from Mercy in kenya telling me what a lovely time she is having learning her english. yep always something. xxxxxx
Now I am crying when I am reading your comment. It is true what you wrote. You have my full support! Great that you are doing these good things and that you find strenght inside. Honestly I dont think I will be living long. Simply this disease will end up with me pretty soon (if noone stops MS progression). But I am dealing with it, simply I dont want my son to watch how I suffer and I dont want to suffer long. People who pass suddenly and with no pain are so lucky! I had mono 3 years ago, I was infected by my son. Sometimes I am asking myself "what did I do wrong?" "I was only kissing my baby like every parent". Well life is unfair :-(
if you have a son you dont want your legacy to be when the going gets tough get going now do you? hold onto his love hun, there are no guarantees in life. i watched my beloved husband slowly leave me but i still kept going. i keep going so no one forgets him. life is tough always look on the positive side of life. if you feel depressed and unhappy talk to someone ok. you didnt do anything wrong, non of us do. i lost one of my friends who had MS for 30 years, she survived MS but the spinal cancer took her in the end. I mean really not content with RRMS she ended up with one of the worse cancers too. Look in the mirror and see yourself, and say I am here and god has given me a challenge he only does that to his strongest soldiers hunny. HUGS. xxx
You ok Emilia? xxxx
Yes. I am. Thanks for your help :-) it means a lot for me.
Emilia and Zenda, I empathize with you both. We have such difficult bodies to live in. (TN is one of the all time world’s worst.) Even people I am or have been close to just do NOT get it. And that hurts too. Just in a different way.🌷
I understand that they dont want to get it as they are scared they may..........especially family.
Are you Italien? My mother was. xxxx stay strong. MY MOTTO IS "ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE". Dr GIOVANNONI needs us so he can help others with MS. if that makes any sense. xx
Dear Zenda, as the disease progressed, I think many old friends, colleagues and family did not want to give up how they “knew” me. As you say, at some level it scares them. I wonder if it forces them to confront their own mortality. My own spouse doesn’t get it and I have thrown my hands up (when I can!). Yes, I am all Italian and I miss good food! The “Italien” was a joke a friend sent showing “The Alien” and beside it, The Alien talking with its hands. Thus, “Italien”. A funny! I have tried never to lose my sense of humor. You, lovely woman, have gone through far too much for one person, and you are still with us and doing good things in the world. And yes, everything you say makes sense. Prof G needs us, we need him! Sending love your way.💕💕
I agree with confronting their own mortality. my mum my my father in the war in italy they got married, and well had 6 children I am one of them. a long story lol. I loved my mum dearly and my favorite memory was xmas when she would be drying the pasta on the bed for her famous lasagne. Brits cant make Italien sauce lol. i have my own blog too. led a great life. Would love to be on a trial or something on how MS affects us and what we all do too survive. I dont think we can private message on here. shame. i have a large italien family in italy spread all over. YEP A SENSE of humour is so important for us to have. lots of love, from an MS sister. xx
I agree. I am lucky that I managed to get sativex and it really helps with pain , it is very very mild so no weird feelings or side effects.but not. with stiffness or spasms unfortunately. I make cannabis cookies and half a cookies before bed ensures a good night sleep, but why can’t we have cannabis on prescription??
Pascal, I envy you that cannabis works for sleep! :) I have cerebellar involvement and it whacks me like a sledgehammer. I literally cannot move if I take it. I’m very happy for you. Cheers and happy sleeping!🌷
Truly integrated care for people with advancing disease. Like the ALS clinics in the US. Every MS center should have an infectious disease person, a psychiatrist, a urologist, a PT and OT person, a pulmonologist,... tired of coordinating all of the specialists myself
A treatment to stop the neuro-degeneration which leads to increasing disability (probably covered by your smouldering MS point). So an MSer at EDSS 4 (as an example) would get no worse. They would remain in employment, less stress on relationships, reduced need for neuro appointments / MS nurse visits, improved mental health etc.
More research on PPMS so that those of us with this can have some hope of a slowing (or even stopping) of progression. It would also be good if trials could be open to those over the age of 70 who are still relatively fit and have possibly 20-30 years of life left to live.
i have PPMS. started with ON in 2000 it took another 16 years to get diagnosis. i am 72 this year. I would love the social care workers and the councils to understand my needs. I need a home which is adapted (i know 4 in my sheltered complex all filled with non wheelchair tenants). I cant get out as the grounds are unsuitable i am a prisoner in my own home. My MS is moving forward to the end i reckon 2024. I have awful self isolation, no one understands. their idea is i go out and sit in a cafe and have a coffee and a cake. i cant sit down with my legs dangling the pain is unbearable, my back goes into spasms. i think trials of over 70 years is a good idea. at the moment i dont want another 20 years of life, not the way i am right now. i cant deal with much more of the ignorance of people who are supposed to care for us. PPMS is the forgotten MS.
In the UK, the serious under-staffing of MS departments in hospitals. The shortage of staff means very limited access specialist MS nurses and GPs are largely relatively ignorant of the needs of PwMS in my experience. Just someone to turn to for advice and help with symptoms would be a huge help.
1. Antivirals
2. Antivirals
3. Antivirals (I'm saving to buy some, which ones? 😁
4. Antivirals
5. Antivirals
6. Antivirals
7. Hepatitis b sounds nice, i bet Antivirals are nice.
8. Any kind of Antivirals will do.
9. Maybe I'll become a sex worker
10. No, but joke aside - also Steroids for relapses. I went through relapses during covid abd they wouldn't give me anything.
- Also GPs are very "its not ms, ms is rare" and happy to fob you off with b12 deficiency excuses when Its ABSOLUTELY urgent mri is needed.
- Also gps do not look at neurological symptoms dispersed in time to determine a need to refer for mri urgently - they dont think ok numb hands at todays visit but hang on this person had optic neuritis last year (!)
Dr. G, consider looking at FastGrants from Patrick Collison and Tyler Cowen (https://future.com/what-we-learned-doing-fast-grants/) if you are having trouble getting funding to do HAART studies into MS. They have a particular focus on funding trials of older, repurposed drugs (like generic Truvada) for new problems. I bet they could get you the 5-7 million you requested in an older post to run such a trial
FWIW, my primary care doctor was the one who thought I had multiple sclerosis, the 2 neurologists I saw later disagreed. 5 years later, I was diagnosed when I had optic neuritis.
And I agree, studies looking at how to treat the EBV virus that triggers MS would be my biggest request. If studies are not forthcoming, perhaps we can organize to get put on PrEP and pool our results.
My PPMS started with ON. it ended with ON. well the first VEP showed i had ON. then i had another one in 2015 VEP which showed active lesions in brain stem or whatever they call it between brain and optic nerves AGAIN worse. i had MRI with some lesions on spine, i didnt have relapses remission so therefore could have had MS. then the neurologist did research and realised i had PPMS. diagnosed 2016. I had EBV in 1999 and first symptom ON in 2000. dont give up get active and push. i went private for appointments and was dealt with differently. now my MS is on the downward spiral i am 72 this year. for 23 years i have had MS. oh i havent had antivirals lol, i did get covid IN HOSPITAL when i went in for heart issues for 3 weeks. they did another MRI at the time, and yep my MS was also not behaving itself lol.
Thanks for sharing your story. Do you have any serious disability? Once I read that MS which starts from ON is the one which has quite good prognosis.
My neurologist puts me at 7.5 on the EDSS scale (disablity scale).
7.5: You can’t take more than a few steps. You might need help getting in and out of a wheelchair. You can’t move yourself around in a non-motorized wheelchair for a full day
i try my best to stay mobile as much as i can but it is a few steps, sit rest etc. its getting harder i have to say, but i am 72 this year and i have friends without MS and well i have to say i am in better shape then they are. mainly its down to my strict healthy diet and keeping a weight of 9stones. I am 5" 8". I eat very good. no transfats, tons of fruit, fish and only chicken. salads and things i never eat fried food, it has to be fresh. fortified milk (coconut). My bloods are extremely good, no deficiets. my doctor said to me one day whats your secret lol. she hadnt seen such good bloods, although last year we had an issue with liver and other anomalies, it turned out to be medication for my heart condition i developed last march. very mild furring of an artery all sorted on 1 years meds. the liver was down to the statin they had me on. even my BP is good now.
I have never heard about the onset O.N. differential so perhaps i got the better option then after all. PPMS is quite often from O.N. My neurolgoist believes not enough of them do V.E.P. tests he swears by them. so thankfully he does as it showed i had MS where my MRI was showing lesions not enough for a diagnsosis, and of course PPMS is slow progressive anyway and can be different to onset RRMS as no remissions as such. I could write a book about my PPMS lol.
I was severely disabled by undiagnosed MS and was also told it was B12 deficiency. And depression. And chronic fatigue syndrome. For many years. All to save the NHS less than £200 for an MRI scan. Having optic neuritis made no difference for me either. I only got a diagnosis via Dr Google and going private, far too late 🤕
The same was in my case. You know how many psychologist said I am mentally sick? At least 3. And neurologist with 20 years of experience said its B12 deficiency. Funny...
Actually dr G diagnosed" me with ms selfie a few years before that - i kept googling "always tired even after sleeping" and I found ms selfie. I read.
I thought "naah NOT ME, the gp didnt seem concerned that its ms but these poor people with ms, this dr really is on the ball". I remember an irl dr talking about how the best older neuro professors in uni thought it was ebv virus behind ms.
But yes, gps really dont like dr google and for good reason. It complocates their 2m diagnosis based on absolutely no patient history and absolutely 0 interest in prevention.
I was fortunate that back in the days of ‘fund-holder’ GPs, my doctor offered to pay for an MRI rather than waiting for a neurologist to order one. I was also the other way round to you, my first symptom in 1990 was optic neuritis, it still took some time to get any confirmation.
What I find completely insane is that there is a cure but not many are willing to believe it- including the Neuros
Fifteen years ago I spent $40 000 USD on a MSC transplant done by Prof Slavin in Israel. At the time I’d had MS for 10 years, I had many issues, my left leg was unable to lift at all. And I was going downhill rapidly.
Within a month of the stem cell (not HSCT) I was running again.
My neurologist refused to acknowledge my improvement until five years later when I was still relapse free and my prior disabilities nearly all gone. He called me to find out more about the stem cell. But at 6 years post MSC I relapsed. MSC had gone up to over $100 000 USD so I did research and took lemtrada. Ten years since taking it I’ve been relapse free and pretty much every symptom is gone.
Many people and doctors know my story, I’ve been in the media, but still people get diagnosed with MS and are never offered these more effective treatments.
I consider myself now cured. At fifty I’ve taken up running again and can easily run 3 km in the tropics- heat is no longer an issue for me.
I tell everyone to do what I did and aggressively fight back but my advice seems to fall on deaf years and then I have to watch people I care about get sicker and sicker. Why???
I know some treatments are expensive, but so are wheelchairs and not being able to walk and modifying houses and cars.
It is said an MS patient is worth three million dollars to the health care system over a lifetime-does it not make more financial sense to use these proven, but perhaps initially costly treatments straight up?
INDEED! I spent 3 decades trying get a Dx.. then in my 50's finally got it and was offered Tecfidera. What? I was still walking and had relatively low disability but did have some. Now I am at 6.5 on the EDSS scale and it hasnt been 10 years since I was Dx'd. (2015). Thing is, If i had been offered the stem cell treatment when I was Dx'd, i would have jumped on it. Now I have more comorbidities.. COPD, CHF so not sure I would even be elegible.. notwith standing my age. I have heard that they wont consider anyone over 60 for this. So I missed my chance because I had such a long delay in Dx and now am just screwed. Currently active SPMS with more than 100 lesions in my brain and cervical spine
Is this transplant done by Prof Slavin in Israel available also for people with PPMS? Or only RRMS? Thanks for sharing your story. Very interesting.
For me it’s management of symptoms
We have a great big list of DMTs and how they work etc
For daily symptoms the process is
Try this one. Oh it’s got xyz side affect and might cause dementia for prolonged use
Ok try this instead. Oh but you’ll be having a sedative affect most of the time and dry mouth
Ok try this one. But there’s potential risks for xyz
We need something to manage neuropathy, daily symptoms, MS hug etc
Enough just throwing meds at us. Do proper trials and find the top 3 or so that actually work. Or make new ones! All our symptom meds are decades old
A proper diagnosis would be a good start. People are left unable to have disease modifying drugs or join trials.
Treatment for those with paediatric MS. So few studies being done and it relies on getting a brave paediatric neurologist to offer high efficacy therapy early on. Plus this group need input for help with schooling, exams and psychological support and yet largely this is totally lacking.
There definitely needs to be more awareness raised for pediatric MS. It was very difficult to even get a correct diagnosis for my daughter. Her earliest symptoms at 8 yrs old did not seem strictly neurological, so I honestly don't fault the doctors for not recognizing it. However, for the next ten years, she was sent to so many different specialists and even hospitalized twice. They all examined her again and again, ran blood work over and over, and scanned nearly every part of her, with X-rays, CT scans, MRIs (not brain). She was even misdiagnosed with and treated for Juvenile Rheumatoid Arthritis (Methotrexate and Enbrel). She suffered many symptoms all throughout her childhood, but it wasn't until she was 18 and lost vision in her eye, that anyone thought to scan her brain. Did she have the lesions all along? We'll never know, I guess. But I would never wish that kind of journey on any little kid.
Knowledge, people should know more and understand that now it s different disease than 20 years ago (and I mean also neurologist - when I was in the hospital with my first relapse and half of my body was completely numb and even though I m also a doctor - but radiologist so neurology I only remember from uni classes, after 7 days of solumedrol my neurologist told me that now there is no chance that it will improve - two months later I feel like a totally healthy person)
High efficacy DMT even for young, stable and newly diagnosed (they wanted to give me dimethyl fumarate or interferon because I wasn’t sick enough (multiple lesions in MRI, present oligoclonal bands in CSF, and relapse) 🤦🏼♀️, so I wrote myself a prescription and paid for ofatumumab by myself but I m sure most of the people can’t afford it and they trust in everything what their doctor says
OMG! Yes! You have to advocate for yourself! Both ways. I am now 65 years old. Having a delay of 3 decades for diagnosis did not help my case at all. Now I have a neuro that is trying to bully me onto Ocrevus after having a horrible experience with Mayzent. I nearly died on Mayzent. One infection after another and my immune system basically tanked. I finally had to stop when I cracked a tooth and was being treated with 2000mg of penicillin a day for the abcess and my system was not responding to it. It was horrible. I am now on Aubagio. Its not as hard core and school is still out on how well it is working but I am not dealing with UTI's every 3 weeks, abcesses that do not respond to anti biotics, skin infections with every scrape and cut, Pneumonia hospitalization from a little cold that wont clear. Sometimes the doc has to back off and look at the whole picture which this doctor is not doing. She is seeing a hard case of SPMS and thats it. Not seeing ME as a patient with all my other stuff going on. There has to be some balance. If I was a young person, I would consider Ocrevus but not now. It's too much for my system.
Karin, I remember this when you (and Prof G) warned me about Mayzent. I am older, but do you feel Aubagio is working out for you? It sounds like it. Fingers crossed….🌷
In order, I would say flip the pyramid, antiviral trials for smouldering MS and symptomatic treatment. Like many here, at age 70, it took years to get a proper diagnosis. Then, just like that! I was “cured” with NEID according to a very prestigious medical facility here in the states! Within a few years, I was racing downhill in the proverbial hand basket diagnosed with SPMS. I have been fortunate at my age to have lucked into finding an empathic neurologist who believes that SPMS is real, despite NEID, and is aggressive at treating symptoms. I saw her last week and she said (I am serious) no wonder you can’t sleep. Your spasticity (and tremor) is so severe, I don’t know how you are living with this. I couldn’t! (Well, I don’t know how we live with this either…) She shot my back and neck contracture up with botox and ordered medication for sleep. (She wanted to order a sleep medication that could not be approved since I use valium for bladder issues. (Unfortunately, baclofen, which I took for so many years, caused severe aphasic problems, so valium is it.) I concur with those of us here who are older that trials for antivirals are extremely important, especially when we had delayed diagnoses or were denied the most effective DMTs early on. If I were young and had my life in front of me, I’d take the most effective DMT I could get my hands on. (Or get someone to put that IV in my vein!) I think I’ve shared previously that when I was on a high dose chemotherapy trial, the second phase of high doses of cyclophosphamide put me in complete remission from RRMS for several years although it wasn’t fun. Always, many thanks, Prof G. And much thanks the support on this site.🌷
😄👌Our greatest unmet need is the acknowledgment that neurology is in medieval times. Our donation is our bodies and we end up like Michael Jackson’s Thriller. So much medicine for nothing?
https://www.youtube.com/watch?v=9jqOY1Us_ZM
Effective drugs for PPMS, faster diagnosis of PPMS, speed of clinical trials, drugs that target EBV in MS. That's what we need.
Thank you Prof G. For me the answer would have to be ‘early aggressive medication’ - this would have made a big difference to my condition. I too believe strongly in #4 - focussing on the marginal gains I can get and do get by practicing multiple lifestyle ‘enhancers’ - I wish others with MS knew these daily habits do help but unfortunately I / others only really start them when their MS is already advanced.