This lady had facial myokymia, and this was likely her first manifestation of multiple sclerosis. She should have been diagnosed with MS 18+ years ago. Time really is brain and/or spinal cord.
Jul 24, 2023·edited Jul 24, 2023Liked by Gavin Giovannoni
This is a timely topic! I've been crying on and off since Wed, as I left my neurologist's office with news that I have 4 more active lesions in my brain, following an MRI in early July. I am more angry than anything.
My left eye and cheek started twitching in late January. I also had numbness down my whole left side, which I have never had before, it's usually my right side. I went to my GP, because my neuro office won't even let you talk to a MS nurse, unless you have been cleared by your GP of all infections first. My GP witnessed my twitching and she said to call my neurologist. I had an already scheduled appt with my pain clinic doctor that same week and after he gave me a neuro exam, he told me to definitely call my neurologist. I called repeatedly and no one called me back until the middle of Feb. They made an appt for me to see my neurologist in March. I saw him and he examined me and said maybe I'm having a relapse, but it's doubtful, as I am on Tysabri and relapses are rare on that drug. I asked for an MRI, as I hadn't had one for more than a year. I finally had one in the beginning of July and shocker, new disease activity.
He is switching me from Tysabri to Kesimpta. Oh, and they didn't do a spine MRI, so back I have to go for a spine MRI. I have to get a shingles vaccine, but my blood work is already back for Hep etc., and that's all fine. And of course now I'm terrified of disease rebound from Tysabri. My neuro is in a MS clinic, which makes me even angrier at how no one seemed to be in any hurry to help me. So it took from Jan until Sept, almost a year, until I start Kesimpta, because my MS clinic didn't take my complaints seriously. When I saw my neurologist last Wednesday, he said "this could have been a phone appointment. You must have asked for an in person visit". I didn't. A nurse called me and made the appointment and asked me to come in and discuss my MRI. Sheesh, dude, I suppose it would have been easier for him to tell me I progressed over the phone, so he didn't have to look in my twitchy eye. MS is an insidious exhausting disease to try and live with everyday. At age 56 and 26 years since dx, I'm just ready to not even bother with any more MS care. Roll the dice. I can't get a new doctor because I live in Canada, and you get what you get, and you don't get upset. And their is a shortage of MS neurologists.
My apologies for such a negative whiny post on a Monday, I just had to vent. Thank you for giving me the space.
Me - Any time! The frustration is the worst! I keep running up against medication fights with Pharma just to manage my MS. No DMDs! It’s a wonder I have any hair left on my head from pulling it out!! I hear you loud and clear.
No apology necessary! I am so sorry to hear about your struggle and recent news of more lesions. Navigating the medical system can be as exhausting as the disease. Please hang in there and know you have support in this group. Vent anytime.
Grief is a necessary and difficult process. Here in the US, grief is not given the time it needs...we have to keep moving forward. Acceptance is pretty difficult, too. I’m also 56 years old and I can relate to your frustration. Add in hormonal issues, worrying about the world and worrying about children, if you have them. It’s all taxing and different forms of grief. Early in my diagnosis I didn’t give much time to grief or worry; grief didn’t fit into my plan and I really didn’t know much about MS. But recently I have realized that I am not going to “get better” and that was something I had never experienced before. That brings up all kinds of emotions💕
Wow, you are so right on point! I have never had time to process grief, because I have a son to raise and I had a full time job. I left the work force at 52. The world is currently a dumpster fire and my son is in second year of University, I worry about what the world will be like for him. Your realization that you're not ever going to get better, is what I'm dealing with now. Every time I get worse, you'd think that would be a clue that not only am I not going to get better, but I'm actually going to get worse. lol Funny not funny. Thanks for your continued support!
Late diagnosis 61yrs, early onset? In retrospect I had many and frequent mild symptoms even before my first neurological appointment in my mid twenties when exhibiting Lhermitte's sign. Probably from midteens I was having fasciculations, facial twitching etc. Having symptoms from a young age meant I was inclined to regard them as my "normal" as I was not left with any appreciable disability. I am sure I am not alone in living a life with abnormal "normality". This is more important to pick up now that there are effective treatments and less complacency with benign MS.
Joan, no you are not alone living with abnormal normal. I have no idea how long I’ve had this, though I was diagnosed at 42, and not on a DMD until 2 years later. I just noted Patti’s late diagnosis also. I was on the least effective drug for 20 years, and then with NEID, I was instructed to go off of it age 65. I was cured! Now at 70, I’m too old for one of the new DMDs. As Prof G pointed out, the newer drugs for pw/SPMS had trials that only included people/MS up to age 50. Now, it’s symptom management.🌷
I am finding more clues that point to MS before my diagnosis. I did consult my family doctor about eye twitching on my right side. He chalked it up to stress. A year or two later I consulted the same doctor for numbness/pins and needles in my legs. He then referred me to a neuro, who did muscle tests and an MRI lower body (not my brain!) and did not come to a conclusion. Five years later I was tested in the ER for a possible stroke. When that was ruled out, I was sent to a different neuro, with a six-month waiting period. After a few MRIs he started me on Gilenya because he had a suspicion of MS, but it was not definite. I was finally diagnosed a year later, by yet, another neurologist. Who knew what that twitch was trying to tell me.
Man, I'm in a salty mood today lol! I am so frustrated on your behalf, that it took so long to get a diagnosis. All that time wasted and shuffled around from doctor to doctor. I am happy you are diagnosed now and getting treatment! Hoping you have a good week!
I had involuntary facial contortions after exercising in hot, humid Florida. This happened only twice, and it was about four years after my diagnosis about four years ago. I was diagnosed with MS at age 61 and 2015.
My diagnostic time was extended despite multiple serious relapses due to muscle twitching which was a “red flag”. I had a rule out of ALS when the twitching became fasciculations. It wasn’t behaving like ALS and I wasn’t too worried. What it was - a profound magnesium deficit that worsened when docs started trying to right my vitamin D levels. Vitamin D uses quite a bit of magnesium in its transport and metabolism so can deplete levels. Levels in blood stay fairly static (homeostatic control) but storage empties (smooth muscle and bone), so testing can miss issues.
For me, I still twitch at low normal range of magnesium but do fine at 0.76 and up (0.7-1.1). Recently did my genetics and the genetics that also predispose my family to type 2 diabetes, migraine, headache and anxiety - all SNPs pertaining to hypomagnesia - all of mine are non-protective variants. I suspect this is the case for many with low vitamin D.
For the record, and because I had a huge reoccurrence of my low magnesium symptoms week 1 of Mavenclad, I did some digging and found out that cladribine is a prodrug that undergoes phosphorylation x 3 to become the active metabolite. My symptoms of headache, deep bone pain, spasticity then major twitching did not reoccur any further pill weeks once I took an additional 200 mg magnesium bisglycinate on pill days only. The reason I tried this was that magnesium is the cofactor required for the kinases that oversee phosphorylation reactions. This is not medical advice - just my own experience based on my history of hypomagnesia and biochemistry nerd-dom. ;)
I had always had the random eye twitches but it took large doses of vitamin D to really tank my magnesium levels. Couldn’t get my D levels up until I normalized magnesium.
Thank you for this information about magnesium interactions. I had no idea that vitamin d uses magnesium. I also had vitamin d deficiency. I take magnesium chelate . Isthis the best formula to take? Almost impossible to get advice
A chelate makes it easier to absorb. I like my chelates to multitask and have had the best performance (for spasticity/spasms/lack of gut adverse effects) from magnesium bisglycinate. I also like the additional glycine, which is a neurotransmitter. Patient experience only - I'm not a doctor (but was a research chemist lol). Magnesium malate is supposed to be good for pain, and malate is involved in ATP cycle so I do use that as well when I remember to buy it. I looked up magnesium chelate and there is a huge range of quality depending on WHAT the magnesium atom is chelated to. It can be super helpful to work with a scientifically smart naturopathic or functional medicine doctor if available in your country.
I have had intermittent twitching which can last for up to a week in both eyes and the area around my eyes over the last 2 years. My Neurologist has said it could be Mykomia. I'm not actually diagnosed yet but have multiple demylinating lesions found accidentally after an mri for head pressure/strange crawling sensations in my left temple. My lumbar puncture was positive. My mri's have remained stable with no new lesions or enhancing lesions but some black holes! I have no brainstem lesions apparently. Apart from altered sensations in my feet & legs I have no other symptoms. Could the Mykomia be classed as a relapse?
Yes, facial myokymia is an objective sign and could be classified as a relapse if it persists for longer than 48 hours and is not associated with a fever or infection, ....
Yes, failure to diagnose my MS did happen to me. It was gross medical negligence which lasted decades. Dozens of HCPs.
I haven't particularly had any facial symptoms of MS. What I did have was almost every other symptom of MS, including optic neuritis. I spent decades severely disabled and bedbound. But the entire time the NHS insisted I wasn't physically ill and eventually misdiagnosed me with Chronic Fatigue Syndrome, without giving me an MRI scan and while always refusing me a referral to a neurologist. I only got an extremely belated diagnosis of MS by diagnosing myself via Google and going private.
I can't even imagine trying to get a GP, those horrifically good gatekeepers, to take facial twitching seriously. Though I often wonder if they didn't take me seriously because I was too ill. My endless quest to work out why they did this to me, which left me with PTSD, significant cerebral atrophy, and a wheelchair 🤕
I've had MS since I was a child, it's still highly active, as of my most recent MRI scan, and probably was the entire time the NHS were destroying me. I would fight it, if a neurologist tried to change my diagnosis from Relapsing Remitting. I do wish one could just have an MS diagnosis, so one could get whichever treatment is best for one as an individual.
I read this with interest as I have been experiencing myokymia non-stop on my lower right eyelid for the last two months. It's there when I wake up and twitches constantly until I go to sleep. I've tried warm compresses, eye drops, rest, had my vision checked. Nothing has helped. I've now got an intermittent twitch on the left eye upper lid, but as I say, this one is transient. My MS team do not seem bothered about the long standing twitch; I think it's going to have to go on longer for them to do anything about it!
If I was this lady I would definitely want to be labelled PPMS due to more options being available. I was given a RRMS diagnosis in 2009 but didn't see a neurologist again until 2018 (long story due to NHS issue) by which time I had a brain and spine full of lesions. I was labelled as SPMS at this time but I haven't had any new lesions since I started having MRIs and a negative LP so they won't give me any treatment. I have begged to be changed to PPMS with the hope of being offered something but no luck. I agree that there should only be one category and we should all receive the best treatment available to try to slow progression at least!
Joe - Hear hear. This labelling affecting the treatment one gets is not merely unfortunate, it’s life and death. I was considered RR when I was a no longer remitting at all. But that got me a DMD. Granted, it was the lousiest, but I got one.🌷
I would personally prefer Ocrevus over any S1P modulator.. but I am not a dr nor I know what’s best for this patient. Wouldn’t the MRI + LP also offer more insight about which ‘category’ she is at, thus facilitating this decision?
No the MRI and CSF-NFL will simply classify her as having active MS and open the door treatment. Yes, she preferred the option of having ocrelizumab over siponimod.
I asked this because for example the MRI shows a lesion that could justify the facial twitching.. and if yes then it could be an indication that she has had MS since then.. Or a high lesion load could indicate she has had it for many years.. Bur again I don’t fully understand how lesions elucidate the pathophysiology of the illness. These are just some thoughts
I have facial spasms/ eye twitching. This can flare for long periods, it is definitely worsened by the factors mentioned such as stress and tiredness, though even when these things are reduced I will still experience it at some point most days. The nurse initially told me this isn’t ms/ relapse, but my neurologist has observed it at it’s worst in clinic, he mentioned it being bilateral hemifacial spasm, no treatment offered for spasms specifically , but I’ve had HSCT and currently on ocrevus for MS
“Fasciculations” were one of my earliest symptoms before diagnosis. Especially on the left face. (Almost everything, it seems, began and is predominantly left sided. One note in my diagnosis is left hemiparesis.) At the outset, ALS was suspected, because of unrelenting twitching in my dragging legs. The constant left eye and facial twitching eventually led to the dreadful trigeminal neuralgia. I tried living with that for 5 years and took every single anti seizure medicine. One made my tremor so bad, I’d throw cups of coffee and tea over my shoulder in unexpected involuntary movements. I am not kidding! My kids ran out of the way. I broke out in a rash from some; another crashed my legacy low white counts. I found the twitching of my left eye in particular still waxes and wanes, and this has been occurring for almost 30 years. My muscles have generally moved on to rock hard spasticity and left sided neck, shoulder and back contractures. I’m very irritated (controlled understatement) that nothing can or will be done for those of us who are older and are plodding on smouldering. I read a New Yorker piece yesterday about a neurologist in the states whose heart is in the right place, but claims there are pw/MS with only RR and PP. Really? And further, when you’re finished with your infusion DMD (in this case Ocrevis) you are deemed cured! (There was an oblique mention of EBV, btw.) I’m here to say there are those of us with SPMS that are NEID/SAW, we’re older, and we’re still progressing and relapsing, including muscle and eye twitching with diplopia and other visual changes to boot. In addition, trials for DMDs do not include pw/MS over the age of 50. We’re on our own. Prof G, I’m with you. This is one disease. I wish they’d get with it.🌷
I’ve had the Halpike for vertigo symptoms. Didn’t do a lot of good. I have been doing eye movement exercises. Following a pen with head still. So looking to the right and up and down makes me feel sick. I keep doing it though. When I look left it’s not so bad .
I’ve always had bouts of facial twitching and leg muscle twitching. I thought they were mini spasms.
Liz, when I lost my balance, I was really irritated about the insistence on BPPV. The rehabilitation for that made me literally vomit. I’m not kidding. The “liberator movement/treatment was awful. So was moving my head back and forth while walking! Impossible.🌷
I experienced eye twitching several different times working long hours staring at two 21 inch computer monitors up to 8-9 hours. This eye twitching was prior to my more obvious MS symptoms/diagnosis. I cannot recall if I experienced eye twitching more than a few times.
I assumed the eye twitch derived from eye strain and sleep deprivation, eye rest and proper sleep duration solved my eye twitching issues, eye twitching was intermittent, primarily at work.
I would've never agreed my eye twitch was MS related until I read this post.
This is a timely topic! I've been crying on and off since Wed, as I left my neurologist's office with news that I have 4 more active lesions in my brain, following an MRI in early July. I am more angry than anything.
My left eye and cheek started twitching in late January. I also had numbness down my whole left side, which I have never had before, it's usually my right side. I went to my GP, because my neuro office won't even let you talk to a MS nurse, unless you have been cleared by your GP of all infections first. My GP witnessed my twitching and she said to call my neurologist. I had an already scheduled appt with my pain clinic doctor that same week and after he gave me a neuro exam, he told me to definitely call my neurologist. I called repeatedly and no one called me back until the middle of Feb. They made an appt for me to see my neurologist in March. I saw him and he examined me and said maybe I'm having a relapse, but it's doubtful, as I am on Tysabri and relapses are rare on that drug. I asked for an MRI, as I hadn't had one for more than a year. I finally had one in the beginning of July and shocker, new disease activity.
He is switching me from Tysabri to Kesimpta. Oh, and they didn't do a spine MRI, so back I have to go for a spine MRI. I have to get a shingles vaccine, but my blood work is already back for Hep etc., and that's all fine. And of course now I'm terrified of disease rebound from Tysabri. My neuro is in a MS clinic, which makes me even angrier at how no one seemed to be in any hurry to help me. So it took from Jan until Sept, almost a year, until I start Kesimpta, because my MS clinic didn't take my complaints seriously. When I saw my neurologist last Wednesday, he said "this could have been a phone appointment. You must have asked for an in person visit". I didn't. A nurse called me and made the appointment and asked me to come in and discuss my MRI. Sheesh, dude, I suppose it would have been easier for him to tell me I progressed over the phone, so he didn't have to look in my twitchy eye. MS is an insidious exhausting disease to try and live with everyday. At age 56 and 26 years since dx, I'm just ready to not even bother with any more MS care. Roll the dice. I can't get a new doctor because I live in Canada, and you get what you get, and you don't get upset. And their is a shortage of MS neurologists.
My apologies for such a negative whiny post on a Monday, I just had to vent. Thank you for giving me the space.
That’s what we’re here for. Vent away. I’m so sorry you’re going through this.🌷
Thank you friend!
Me - Any time! The frustration is the worst! I keep running up against medication fights with Pharma just to manage my MS. No DMDs! It’s a wonder I have any hair left on my head from pulling it out!! I hear you loud and clear.
No apology necessary! I am so sorry to hear about your struggle and recent news of more lesions. Navigating the medical system can be as exhausting as the disease. Please hang in there and know you have support in this group. Vent anytime.
Thank you! I appreciate your support. I'm trying my best to hang in there, just going through all the stages of grief lol.
Grief is a necessary and difficult process. Here in the US, grief is not given the time it needs...we have to keep moving forward. Acceptance is pretty difficult, too. I’m also 56 years old and I can relate to your frustration. Add in hormonal issues, worrying about the world and worrying about children, if you have them. It’s all taxing and different forms of grief. Early in my diagnosis I didn’t give much time to grief or worry; grief didn’t fit into my plan and I really didn’t know much about MS. But recently I have realized that I am not going to “get better” and that was something I had never experienced before. That brings up all kinds of emotions💕
Sheila, well put. Hope for the best, plan for the worst. There is no “better” as we smoulder and age.
🌸
Wow, you are so right on point! I have never had time to process grief, because I have a son to raise and I had a full time job. I left the work force at 52. The world is currently a dumpster fire and my son is in second year of University, I worry about what the world will be like for him. Your realization that you're not ever going to get better, is what I'm dealing with now. Every time I get worse, you'd think that would be a clue that not only am I not going to get better, but I'm actually going to get worse. lol Funny not funny. Thanks for your continued support!
We’re all in this dumpster fire together🫠and it helps me to know that you are going through the same things. Thanks for sharing today🌼
Late diagnosis 61yrs, early onset? In retrospect I had many and frequent mild symptoms even before my first neurological appointment in my mid twenties when exhibiting Lhermitte's sign. Probably from midteens I was having fasciculations, facial twitching etc. Having symptoms from a young age meant I was inclined to regard them as my "normal" as I was not left with any appreciable disability. I am sure I am not alone in living a life with abnormal "normality". This is more important to pick up now that there are effective treatments and less complacency with benign MS.
Joan, no you are not alone living with abnormal normal. I have no idea how long I’ve had this, though I was diagnosed at 42, and not on a DMD until 2 years later. I just noted Patti’s late diagnosis also. I was on the least effective drug for 20 years, and then with NEID, I was instructed to go off of it age 65. I was cured! Now at 70, I’m too old for one of the new DMDs. As Prof G pointed out, the newer drugs for pw/SPMS had trials that only included people/MS up to age 50. Now, it’s symptom management.🌷
I am finding more clues that point to MS before my diagnosis. I did consult my family doctor about eye twitching on my right side. He chalked it up to stress. A year or two later I consulted the same doctor for numbness/pins and needles in my legs. He then referred me to a neuro, who did muscle tests and an MRI lower body (not my brain!) and did not come to a conclusion. Five years later I was tested in the ER for a possible stroke. When that was ruled out, I was sent to a different neuro, with a six-month waiting period. After a few MRIs he started me on Gilenya because he had a suspicion of MS, but it was not definite. I was finally diagnosed a year later, by yet, another neurologist. Who knew what that twitch was trying to tell me.
Man, I'm in a salty mood today lol! I am so frustrated on your behalf, that it took so long to get a diagnosis. All that time wasted and shuffled around from doctor to doctor. I am happy you are diagnosed now and getting treatment! Hoping you have a good week!
Hi!
Thanks for taking the time to offer support🙂Happy week to you, too.
Hello Sheila, yes. Same here. We were first put through EMGs. I was told I had “peripheral neuropathy”. Okay. From what?! Shaking my head…🌷
I had involuntary facial contortions after exercising in hot, humid Florida. This happened only twice, and it was about four years after my diagnosis about four years ago. I was diagnosed with MS at age 61 and 2015.
My diagnostic time was extended despite multiple serious relapses due to muscle twitching which was a “red flag”. I had a rule out of ALS when the twitching became fasciculations. It wasn’t behaving like ALS and I wasn’t too worried. What it was - a profound magnesium deficit that worsened when docs started trying to right my vitamin D levels. Vitamin D uses quite a bit of magnesium in its transport and metabolism so can deplete levels. Levels in blood stay fairly static (homeostatic control) but storage empties (smooth muscle and bone), so testing can miss issues.
For me, I still twitch at low normal range of magnesium but do fine at 0.76 and up (0.7-1.1). Recently did my genetics and the genetics that also predispose my family to type 2 diabetes, migraine, headache and anxiety - all SNPs pertaining to hypomagnesia - all of mine are non-protective variants. I suspect this is the case for many with low vitamin D.
For the record, and because I had a huge reoccurrence of my low magnesium symptoms week 1 of Mavenclad, I did some digging and found out that cladribine is a prodrug that undergoes phosphorylation x 3 to become the active metabolite. My symptoms of headache, deep bone pain, spasticity then major twitching did not reoccur any further pill weeks once I took an additional 200 mg magnesium bisglycinate on pill days only. The reason I tried this was that magnesium is the cofactor required for the kinases that oversee phosphorylation reactions. This is not medical advice - just my own experience based on my history of hypomagnesia and biochemistry nerd-dom. ;)
I had always had the random eye twitches but it took large doses of vitamin D to really tank my magnesium levels. Couldn’t get my D levels up until I normalized magnesium.
Thank you for this information about magnesium interactions. I had no idea that vitamin d uses magnesium. I also had vitamin d deficiency. I take magnesium chelate . Isthis the best formula to take? Almost impossible to get advice
A chelate makes it easier to absorb. I like my chelates to multitask and have had the best performance (for spasticity/spasms/lack of gut adverse effects) from magnesium bisglycinate. I also like the additional glycine, which is a neurotransmitter. Patient experience only - I'm not a doctor (but was a research chemist lol). Magnesium malate is supposed to be good for pain, and malate is involved in ATP cycle so I do use that as well when I remember to buy it. I looked up magnesium chelate and there is a huge range of quality depending on WHAT the magnesium atom is chelated to. It can be super helpful to work with a scientifically smart naturopathic or functional medicine doctor if available in your country.
I have had intermittent twitching which can last for up to a week in both eyes and the area around my eyes over the last 2 years. My Neurologist has said it could be Mykomia. I'm not actually diagnosed yet but have multiple demylinating lesions found accidentally after an mri for head pressure/strange crawling sensations in my left temple. My lumbar puncture was positive. My mri's have remained stable with no new lesions or enhancing lesions but some black holes! I have no brainstem lesions apparently. Apart from altered sensations in my feet & legs I have no other symptoms. Could the Mykomia be classed as a relapse?
Yes, facial myokymia is an objective sign and could be classified as a relapse if it persists for longer than 48 hours and is not associated with a fever or infection, ....
Yes, failure to diagnose my MS did happen to me. It was gross medical negligence which lasted decades. Dozens of HCPs.
I haven't particularly had any facial symptoms of MS. What I did have was almost every other symptom of MS, including optic neuritis. I spent decades severely disabled and bedbound. But the entire time the NHS insisted I wasn't physically ill and eventually misdiagnosed me with Chronic Fatigue Syndrome, without giving me an MRI scan and while always refusing me a referral to a neurologist. I only got an extremely belated diagnosis of MS by diagnosing myself via Google and going private.
I can't even imagine trying to get a GP, those horrifically good gatekeepers, to take facial twitching seriously. Though I often wonder if they didn't take me seriously because I was too ill. My endless quest to work out why they did this to me, which left me with PTSD, significant cerebral atrophy, and a wheelchair 🤕
I've had MS since I was a child, it's still highly active, as of my most recent MRI scan, and probably was the entire time the NHS were destroying me. I would fight it, if a neurologist tried to change my diagnosis from Relapsing Remitting. I do wish one could just have an MS diagnosis, so one could get whichever treatment is best for one as an individual.
I read this with interest as I have been experiencing myokymia non-stop on my lower right eyelid for the last two months. It's there when I wake up and twitches constantly until I go to sleep. I've tried warm compresses, eye drops, rest, had my vision checked. Nothing has helped. I've now got an intermittent twitch on the left eye upper lid, but as I say, this one is transient. My MS team do not seem bothered about the long standing twitch; I think it's going to have to go on longer for them to do anything about it!
If I was this lady I would definitely want to be labelled PPMS due to more options being available. I was given a RRMS diagnosis in 2009 but didn't see a neurologist again until 2018 (long story due to NHS issue) by which time I had a brain and spine full of lesions. I was labelled as SPMS at this time but I haven't had any new lesions since I started having MRIs and a negative LP so they won't give me any treatment. I have begged to be changed to PPMS with the hope of being offered something but no luck. I agree that there should only be one category and we should all receive the best treatment available to try to slow progression at least!
Joe - Hear hear. This labelling affecting the treatment one gets is not merely unfortunate, it’s life and death. I was considered RR when I was a no longer remitting at all. But that got me a DMD. Granted, it was the lousiest, but I got one.🌷
I would personally prefer Ocrevus over any S1P modulator.. but I am not a dr nor I know what’s best for this patient. Wouldn’t the MRI + LP also offer more insight about which ‘category’ she is at, thus facilitating this decision?
No the MRI and CSF-NFL will simply classify her as having active MS and open the door treatment. Yes, she preferred the option of having ocrelizumab over siponimod.
I asked this because for example the MRI shows a lesion that could justify the facial twitching.. and if yes then it could be an indication that she has had MS since then.. Or a high lesion load could indicate she has had it for many years.. Bur again I don’t fully understand how lesions elucidate the pathophysiology of the illness. These are just some thoughts
Huh I didn’t realise this could be a symptom for MS
Very very infrequently I will have a minor twitch in my cheek which goes away after 30 seconds or so
I experienced muscle fasciculations and that lead me to a Neuro .He told me
To chill out and offered me Valium. I was concerned about ALS at the time.
It took 10 years and many more symptoms before my MS diagnosis. Also, my 4th neurologist.
I have facial spasms/ eye twitching. This can flare for long periods, it is definitely worsened by the factors mentioned such as stress and tiredness, though even when these things are reduced I will still experience it at some point most days. The nurse initially told me this isn’t ms/ relapse, but my neurologist has observed it at it’s worst in clinic, he mentioned it being bilateral hemifacial spasm, no treatment offered for spasms specifically , but I’ve had HSCT and currently on ocrevus for MS
“Fasciculations” were one of my earliest symptoms before diagnosis. Especially on the left face. (Almost everything, it seems, began and is predominantly left sided. One note in my diagnosis is left hemiparesis.) At the outset, ALS was suspected, because of unrelenting twitching in my dragging legs. The constant left eye and facial twitching eventually led to the dreadful trigeminal neuralgia. I tried living with that for 5 years and took every single anti seizure medicine. One made my tremor so bad, I’d throw cups of coffee and tea over my shoulder in unexpected involuntary movements. I am not kidding! My kids ran out of the way. I broke out in a rash from some; another crashed my legacy low white counts. I found the twitching of my left eye in particular still waxes and wanes, and this has been occurring for almost 30 years. My muscles have generally moved on to rock hard spasticity and left sided neck, shoulder and back contractures. I’m very irritated (controlled understatement) that nothing can or will be done for those of us who are older and are plodding on smouldering. I read a New Yorker piece yesterday about a neurologist in the states whose heart is in the right place, but claims there are pw/MS with only RR and PP. Really? And further, when you’re finished with your infusion DMD (in this case Ocrevis) you are deemed cured! (There was an oblique mention of EBV, btw.) I’m here to say there are those of us with SPMS that are NEID/SAW, we’re older, and we’re still progressing and relapsing, including muscle and eye twitching with diplopia and other visual changes to boot. In addition, trials for DMDs do not include pw/MS over the age of 50. We’re on our own. Prof G, I’m with you. This is one disease. I wish they’d get with it.🌷
Sorry forgot to say I've had two or three episodes of vertigo which the Neurologist thought could be bppv 🤔
BPPV is a very specific diagnosis that is difficult to diagnose without doing the Halpike manoeuvre. In addition, MS can mimic PPPV.
I’ve had the Halpike for vertigo symptoms. Didn’t do a lot of good. I have been doing eye movement exercises. Following a pen with head still. So looking to the right and up and down makes me feel sick. I keep doing it though. When I look left it’s not so bad .
I’ve always had bouts of facial twitching and leg muscle twitching. I thought they were mini spasms.
Liz, when I lost my balance, I was really irritated about the insistence on BPPV. The rehabilitation for that made me literally vomit. I’m not kidding. The “liberator movement/treatment was awful. So was moving my head back and forth while walking! Impossible.🌷
I experienced eye twitching several different times working long hours staring at two 21 inch computer monitors up to 8-9 hours. This eye twitching was prior to my more obvious MS symptoms/diagnosis. I cannot recall if I experienced eye twitching more than a few times.
I assumed the eye twitch derived from eye strain and sleep deprivation, eye rest and proper sleep duration solved my eye twitching issues, eye twitching was intermittent, primarily at work.
I would've never agreed my eye twitch was MS related until I read this post.