This issue of "how do I feel?" is the single most annoying aspect of MS for me. I tend to brush things off, so if I have a symptom, I assume it's "only MS" and carry on. The trouble is that there's a dearth of help immediately available and I don't see the point in bothering an HCP, especially in these days of Covid. The symptom might be minor, e.g. something I call 'fizzy legs', or lack of energy. However I worry that I might be ignoring something much more sinister.
Alternatively it's easy to become alarmed at the onset of something unpleasant, thinking it's much worse than MS, say a stroke, especially if it's something unusual. There is a temptation to seek help in a panic, only to find it's just my MS playing up. It's really frustrating that MS is such a confusing condition.
A very poignant post for me. Under the current definition of a relapse, i have relapses every 3ish months despite being on Ocrelizumab. The pattern is always the same, starting with tingling sensation on the soles of my feet. Symptoms are mainly not new but old familiar ones. MRIs are stable and therefore my requests for escalating treatment is dismissed. I am going through one of these episodes right now. I think it was due to a stressful argument as my symptoms 'appeared' the next morning. Similarly, when i was told i had MS, my old symptoms turned on like a tap. Are stress driven relapses genuine or pseudo? I am kicking myself as stress is avoidable and one of the few things that a patient can influence. However, MS is a stressful game
Yes, stress is important. Studies done in the pre-DMT era showed you were about 50% more likely to have a relapse in the at-risk period after a major stressor. For example, being exposed to a war, family bereavement, etc. I am not sure this applies to people on DMTs.
I am aware that stress, which is biological and associated with a change in circulating cortisol levels, and well defined biological changes, which are associated with worsening of preexisting symptoms, low mood, anxiety, poor sleep, fatigue and worsening cognitive function. I think this the MS brain is simply more susceptible to stress.
Please be aware that there is a difference between acute, short-lived, stress, e.g. studying and doing an examination, versus chronic stress, e.g. poverty. Acute stress often improves performance vs. chronic stress that reduces function.
I think worsening symptoms due to stress is a pseudorelapse, unless there are new focal MS lesions or activation and expansion of existing lesions.
Made my day. Thank you. I was kind of thinking along similar lines. I could hardly compare my stressful event with a war or bereavement.....2 weeks with the kids and inlaws taking its toll more likely and if that tripped me in to a relapse then i am in trouble. Thanks Prof
Had a strange occurrence yesterday, which has persisted today in that i had a band of numbness, lowered sensation around my right wrist. I am convinced this is due to wearing (for 3 days prior) my new fitbit watch, as it would otherwise be a huge coincidence since i do not wear watches usually. Maybe i am hyper sensitive to body changes or maybe my body is just hyper sensitive as the fitbit, by its mode of action presumably has some interference with nerve pathways however slight. Just thought it was an interesting observation
No red mark or allergic reaction. It is my wrist which had previously been broken with metal pins inserted although these have subsequently been removed. I am experiencing heightened sensory symptoms at the moment due to either a relapse or pseudo relapse and these type of sensations would not be unfamiliar else where - similar band of numbness around sock line for instance. so it could just be a coincidence but very strange that it coincided with my wearing a watch which is presumably magnetised for charging etc for the first time in 20 odd years!
now that is interesting... I am unable to wear a watch at all because they just do not keep time for me. I was wondering if something similar was at play... For me this phenom is so bad that even my clocks in my vicinity (the one over my computer where i spend the most time) do not keep proper time.. i have to rest that one about once a month because it runs 3-4 mins fast every month. even the so called "super accurate quartz crystal watches" do not keep time if i wear them.. Now I know possibly why they might not..
Jan 6, 2022·edited Jan 6, 2022Liked by Gavin Giovannoni
Can the new 7T MRIs coming to clinical use show the small 3-4 mm lesions unable to be picked up on 3T or is NFL the only way to see the biological changes?
Jan 5, 2022·edited Jan 5, 2022Liked by Gavin Giovannoni
Latest “Relapse” (named Pseudo Relapse by my Neuro team despite No Sign of infection or temperature).
Legs went to jelly, woozy head, flushed face with burning sensation on my left side, along with my left arm, achey right arm having a stinging, stabbing pain - and I couldn’t take any weight or lift anything with that arm. Im also unsteady on my feet
Having phoned my MS Nurse early Dec 21, she wanted to rule out infection - notably a UTI (infections cause MS symptoms to flare - it’s called a Pseudo Relapse) A urine sample to my GP proved negative for UTI. A 2nd sample sent yesterday to the GP, who sent it by courier to Beaumont hasn’t yielded any result yet but my MS nurse arranged an appointment to the Neuro day clinic.
Had this appointment 9th Dec, the Neuro on duty did a variety of Neurological tests & named it a Pseudo Relapse.
He brought my MRI forward from May to 14th Feb. I have Ocrelizumab infusion due early Feb (no date yet) and still feel I’m in this “relapse” today 5th Jan 22.
Symptoms:
Flushed/burning left side of face / left arm
Achey arm / elbow - getting worse. On wake up it’s tight and sore.
Right leg numbness / spasticity?
Vision WAS BLURRY only slightly blurry now.
Dizzy / woozy head
Back of my head and my neck numbness + tightness
Hands SORE and tight.
Clumsy - breaking things
Sometimes holding onto furniture and walls to walk.
really? A UTI can trigger a pseudo-relapse? I have UTI's so often I actually purchased some test strips so i can just call my doc to get the medication called in for me.. geez.. who knew..
Thanks for this. I’ve had MS for a long time now, gathered a lot of knowledge and recognise a lot of what you have to say. You’ve raised the bar considerably for treatment standards which is finally getting through to other clinicians . A much needed advocate, thank you again .
Thanks for this, it really helps to clarify things. I am endlessly frustrated that I am always examined a situation where I can fairly capably walk across a room on a flat hard floor. That is, I’m always sitting in a waiting room in cool air-conditioning for at least an hour (6 on one occasion!) before my appointment, tho my MS is extremely temperature-sensitive. Outdoors on uneven ground I need two sticks and after 20 mins walking I stagger, lose my balance, drag my left leg and can’t articulate words. I’ve ended up having to crawl a couple of times due to taking on trails that were a bit of an overreach. But, every time I am assessed, it is under perfect conditions and the assessor will say ‘you’re doing really well’ or some such condescending comment and completely ignore my concerns about my balance, speech, fatigue etc under real-life conditions. Sometimes I wonder if I’m having a relapse, or is this just a bad patch and a pseudo-relapse? but I don’t want to be patted on the hand and told how much worse it could be, so I don’t ask for an appointment. It was good to read this - very validating. UTIs and minor infections make things worse too, as per last comment 👇🏽
After treatment with steroids in hospital, along with most of the side effects you noted already, were weakened teeth resulting in extra dental work and several skin cancers (basal cell carcinomas) within 12 months of steroids. I am fairly certain I will never have steroids again. As to pseudo relapses, I get MS symptoms with UTIs and flu/cold viruses. I also get depressed and feel doomed when these symptoms return thinking that I am getting worse but am always pleasantly surprised that I go back to my normal baseline when the infection is over.
I had a very minimal UTI that I could hardly feel that put me in the hospital for 3 days with exacerbation of severe disequilibrium and oscilliopsia. They wanted to push steroids on me until I insisted they check my urine as I began to feel slight frequency and dysuria and after 3 doses of antibiotics all symptoms subsided. On a similar note, why does lack of sleep or frequent interrupted sleep cause such severe exacerbation of symptoms? Is this just me? I have 2 little kids and I swear they have a conspiracy to take turns waking up at night 😂 and when this happens I get significantly worse disequilibrium until I get some good uninterrupted sleep.
i am a notorious poor sleeper. I get maybe 3 hours of uninterrupted sleep at a time. so every night its a series of naps... 2 hours, then an hour then maybe 3 then 2 then i just aggravated and get up.. every.single.night. none of the sleeping medications work for more than a few hours.. maybe 4 and then i wake up. I am always tired and have been known to nod off at my desk during the day.. it;s horrible.. and coupled with the "normal" MS fatigue, it is crushing
I’m a young female (30) who was diagnosed with probable RRMS 8 months ago. Brain MRI showed 3 T2 lesions (subcortical & infratentorial) no Gd enhancing lesions. MRI cervical spine showed no abnormalities, CSF was OCB positive, neurological exam was normal. I was also screened for NMO & MOG - these were negative. My only symptom was episodic vertigo & nausea - this was the reason I found myself seeing a neurologist in the first instance. The vertigo attacks ( I have had 4 attacks over the past year) would come on very quickly & last approx. 1 - 2 hours typically & would always conclude with me getting physically sick & like a light switch, the vertigo dissipates once I get sick & then I get some sleep & when I awake it’s gone - my head may feel a bit woozy / scalp sensitive for a while afterwards, but that resolves itself overnight. I don’t know if these vertigo attacks are MS related or if I have a vestibular issue also ? None of my vertigo attacks have lasted longer than 1 - 2 hours. I started Gilenya about 6 months ago & I have had one vertigo attack since starting Gilenya.
Definitely think I had an ‘event’ following Covid. Whether relapse or pseudo is tough to call. R leg symptoms worsened, as did balance. Burning sensation in right foot and ankle which is new for me. Neuro thinks likely relapse. It will be interesting to see what next MRI shows. I definitely avoid steroids. Have had enough of those and always decline if I can get through without.
I've only had two of five relapses confirmed by MRI. All were pre-diagnosis and most happened while I was waiting for a referral to come through.
In terms of heat-related symptoms, half an hour seems like a long time for anyone to be out in the middle of summer in the middle of the day! I say that though in recent years I have gotten into ultra running. Ultra races tend to happen when the days are longest and I have run in some scorchers - three races in over 30 degree temperatures. Heat actually does affect me and always has, just not in an MS way. I feel sluggish. In my native New Zealand I can't go outside much in summer - in my childhood due to pale skin and the ozone hole. In my adulthood due to polymorphic light eruption - fortunately not something I experience here in the UK, probably due to higher levels of pollution blocking some of the rays. (Of course now I think about it I should probably mention it to my consultant - and I'm trying to remember if this started before or after I started taking Tecfidera. I think though it's more to do with going from winter here to midsummer there)
Though sun exposure doesn't seem to trigger my MS symptoms I think there is a hormonal link for me but I only realised it recently. I'm going to start logging my fatigue to see if I can find a link.
1998: I was born a completely healthy baby on my due date.
2007: My first symptoms began including difficulty sleeping, anxiety. (8 years old)
2008: The joint pain in my legs began, came and went. (9 years old)
2009: I had a sudden increase in joint pain, but at that point, it was all of my joints. (10 years old)
2010: My pain increased and was very debilitating. (11 years old)
2011: I was diagnosed and treated for JIA (Juvenile Idiopathic Arthritis) with both Methotrexate and Embrel. (12 years old)
2012: The diagnosis of JIA was concluded to be incorrect, and I was then diagnosed with Fibromyalgia and told there was nothing could be done. (13 years old)
2013-2016: I continued to have exhaustion, inability to sleep, random bouts of anxiety, and a lot of pain. But I was done going to doctors and had given up on answers.
2017: I lost vision in the left eye and after my first brain MRI and Lumbar Puncture diagnosed with Multiple Sclerosis. There were 25 brain lesions. (18 years old)
2018-2019: I began experiencing vertigo and migraines. I was on Tecfidera which caused me unbearable side effects, but I never had any new or active lesions.
2020: I began on Vumerity with no side effects. I had chest pain so intense that I was unable to speak for months. And I began having leg weakness as I'd never had before, necessitating the use of a cane. I was sent to physical therapy as no new activity was found on scans. (22 years old)
2021: I progressively lost the ability to walk throughout the year, and needed not only a cane, but later, a wheelchair. (23 years old)
2022: Recently I have been able to walk more and more. It's not very steady, not great (yet!), but I am walking again.
When I was diagnosed with Relapsing-Remitting Multiple Sclerosis in 2017 they put me on Tecifdera which I stayed on for as long as I could handle. I was very compliant with taking my treatment, but the side effects were causing me extreme stomach cramping which was debilitating.
In February 2020 I was switched to Vumerity, and I'm not experiencing any side effects. I’ve never had any new or active lesions since diagnosis.
Because in 2021 I began steadily losing the ability to walk, they believed I was having an MS relapse. After steroid infusion, and 18 days of oral steroids, and months of physical therapy, I continued to worsen. I experienced myoclonus in my legs so bad that I was unable to put one foot in front of the other, knees buckling, and loss of control over them. I also began experiencing moments when I had no control over my hands, unable to grab a spoon or my toothbrush.
Doctors said that my increasing disability was concerning but does not match what they see on scans. My nurse practitioner at the time suggested I change from Vumerity to Ocrevus or Tysabri but ended up deferring to my neurologist (Dr. Ingrid Loma-Miller)
That neurologist (Dr. Ingrid Loma Miller) however was leaving the practice and I now have a new neurologist (Dr. Krzysztof Romanowski). During the transition, they suspected a possible neuromuscular condition, and together they referred me to a neuromuscular specialist (Dr. Adel A. Boulos-Mikhaiel) who did an EMG which came back normal. He explained that the neuromuscular connection seemed fine. And he suggested that all of these symptoms could be side effects of Vumerity or MS progression that cannot be seen on current MRI technology. And he has referred me to Dr. Myla D Goldman, M.D., M.Sc. at VCU in Richmond, VA for an appointment in late April 2022.
At my latest visit, the new neurologist (Dr. Krzysztof Romanowski) explained that the MRIs and EMG rule out all physical causes, and for this reason, he now sees no need for a stronger treatment or any further follow-up. He suggested that this could be a Functional Neurological Disorder and could just get better on its own as time goes on.
I do have times of improvement when I can walk with a cane around my house, but to go any distance longer than that I need a wheelchair.
Has this all been a relapse? Or is this something else?
omgoodness! your story is so similar to mine. I went undiagnosed for so many years. or misdiagnosed with fibromyalgia, and other things and at one point had a doctor tell me i was imagining things. When I started having cognitive decline in 2013 and got lost going to a grocery store i went every week for years, my then doc sent me for a CT of my head. It showed multiple lesions in my brain but because i was on Medicaid thru the state of FL at the time and they refused to cover an MRI, it would be another 2 years before I was Dx'd. When I was eligible for Medicare I got a real doctor and she was mortified that I had not been sent for an MRI after reviewing the CT scan and sent me immediately and didn't wait for results. She referred me right away to neurology and w3ithin a couple of months with further testing was Dx'd with MS. At that time i had over 100 lesions in my brain. Now with progression ongoing i have more than 150, including 6 on brainstem and 7 in cervical spine. I cannot help but wonder sometimes what would have happened if even one doctor along the way had dug deeper and thought to do a scan.. this could have been treated for decades.. I started having symptoms shortly after the birth of my daughter. She turned 35 last month
I've only had one MS relapse (which affected my left side), I sometimes have minor numbness there but it correlates with certain menstrual cycle phases. So, I already know that sympton is coming certain days of the month (usually a pattern with estrogen that I've noticed).
But, my POTS and IST give me orthostatic flares too.. Could this dysautonomia flares be MS flares? Do you know if POTS or IST can be correlated with lessions?
And btw.. Why are hormonal changes related to pseudo flares? Seems interesting to me and also do that means that when those hormones are gone (as in menoapuse) these pseudoflares stop?
This issue of "how do I feel?" is the single most annoying aspect of MS for me. I tend to brush things off, so if I have a symptom, I assume it's "only MS" and carry on. The trouble is that there's a dearth of help immediately available and I don't see the point in bothering an HCP, especially in these days of Covid. The symptom might be minor, e.g. something I call 'fizzy legs', or lack of energy. However I worry that I might be ignoring something much more sinister.
Alternatively it's easy to become alarmed at the onset of something unpleasant, thinking it's much worse than MS, say a stroke, especially if it's something unusual. There is a temptation to seek help in a panic, only to find it's just my MS playing up. It's really frustrating that MS is such a confusing condition.
A very poignant post for me. Under the current definition of a relapse, i have relapses every 3ish months despite being on Ocrelizumab. The pattern is always the same, starting with tingling sensation on the soles of my feet. Symptoms are mainly not new but old familiar ones. MRIs are stable and therefore my requests for escalating treatment is dismissed. I am going through one of these episodes right now. I think it was due to a stressful argument as my symptoms 'appeared' the next morning. Similarly, when i was told i had MS, my old symptoms turned on like a tap. Are stress driven relapses genuine or pseudo? I am kicking myself as stress is avoidable and one of the few things that a patient can influence. However, MS is a stressful game
Yes, stress is important. Studies done in the pre-DMT era showed you were about 50% more likely to have a relapse in the at-risk period after a major stressor. For example, being exposed to a war, family bereavement, etc. I am not sure this applies to people on DMTs.
I am aware that stress, which is biological and associated with a change in circulating cortisol levels, and well defined biological changes, which are associated with worsening of preexisting symptoms, low mood, anxiety, poor sleep, fatigue and worsening cognitive function. I think this the MS brain is simply more susceptible to stress.
Please be aware that there is a difference between acute, short-lived, stress, e.g. studying and doing an examination, versus chronic stress, e.g. poverty. Acute stress often improves performance vs. chronic stress that reduces function.
I think worsening symptoms due to stress is a pseudorelapse, unless there are new focal MS lesions or activation and expansion of existing lesions.
Made my day. Thank you. I was kind of thinking along similar lines. I could hardly compare my stressful event with a war or bereavement.....2 weeks with the kids and inlaws taking its toll more likely and if that tripped me in to a relapse then i am in trouble. Thanks Prof
Had a strange occurrence yesterday, which has persisted today in that i had a band of numbness, lowered sensation around my right wrist. I am convinced this is due to wearing (for 3 days prior) my new fitbit watch, as it would otherwise be a huge coincidence since i do not wear watches usually. Maybe i am hyper sensitive to body changes or maybe my body is just hyper sensitive as the fitbit, by its mode of action presumably has some interference with nerve pathways however slight. Just thought it was an interesting observation
Never heard of this before. No allergic reaction? A red mark on the wrist where the fitbit was touching the skin?
No red mark or allergic reaction. It is my wrist which had previously been broken with metal pins inserted although these have subsequently been removed. I am experiencing heightened sensory symptoms at the moment due to either a relapse or pseudo relapse and these type of sensations would not be unfamiliar else where - similar band of numbness around sock line for instance. so it could just be a coincidence but very strange that it coincided with my wearing a watch which is presumably magnetised for charging etc for the first time in 20 odd years!
now that is interesting... I am unable to wear a watch at all because they just do not keep time for me. I was wondering if something similar was at play... For me this phenom is so bad that even my clocks in my vicinity (the one over my computer where i spend the most time) do not keep proper time.. i have to rest that one about once a month because it runs 3-4 mins fast every month. even the so called "super accurate quartz crystal watches" do not keep time if i wear them.. Now I know possibly why they might not..
Can the new 7T MRIs coming to clinical use show the small 3-4 mm lesions unable to be picked up on 3T or is NFL the only way to see the biological changes?
Latest “Relapse” (named Pseudo Relapse by my Neuro team despite No Sign of infection or temperature).
Legs went to jelly, woozy head, flushed face with burning sensation on my left side, along with my left arm, achey right arm having a stinging, stabbing pain - and I couldn’t take any weight or lift anything with that arm. Im also unsteady on my feet
Having phoned my MS Nurse early Dec 21, she wanted to rule out infection - notably a UTI (infections cause MS symptoms to flare - it’s called a Pseudo Relapse) A urine sample to my GP proved negative for UTI. A 2nd sample sent yesterday to the GP, who sent it by courier to Beaumont hasn’t yielded any result yet but my MS nurse arranged an appointment to the Neuro day clinic.
Had this appointment 9th Dec, the Neuro on duty did a variety of Neurological tests & named it a Pseudo Relapse.
He brought my MRI forward from May to 14th Feb. I have Ocrelizumab infusion due early Feb (no date yet) and still feel I’m in this “relapse” today 5th Jan 22.
Symptoms:
Flushed/burning left side of face / left arm
Achey arm / elbow - getting worse. On wake up it’s tight and sore.
Right leg numbness / spasticity?
Vision WAS BLURRY only slightly blurry now.
Dizzy / woozy head
Back of my head and my neck numbness + tightness
Hands SORE and tight.
Clumsy - breaking things
Sometimes holding onto furniture and walls to walk.
Had shower yesterday - exhausting and slow.
Couldn’t wash my hair as arm couldn’t raise+ hold
really? A UTI can trigger a pseudo-relapse? I have UTI's so often I actually purchased some test strips so i can just call my doc to get the medication called in for me.. geez.. who knew..
You bet.
Thanks for this. I’ve had MS for a long time now, gathered a lot of knowledge and recognise a lot of what you have to say. You’ve raised the bar considerably for treatment standards which is finally getting through to other clinicians . A much needed advocate, thank you again .
Thanks for this, it really helps to clarify things. I am endlessly frustrated that I am always examined a situation where I can fairly capably walk across a room on a flat hard floor. That is, I’m always sitting in a waiting room in cool air-conditioning for at least an hour (6 on one occasion!) before my appointment, tho my MS is extremely temperature-sensitive. Outdoors on uneven ground I need two sticks and after 20 mins walking I stagger, lose my balance, drag my left leg and can’t articulate words. I’ve ended up having to crawl a couple of times due to taking on trails that were a bit of an overreach. But, every time I am assessed, it is under perfect conditions and the assessor will say ‘you’re doing really well’ or some such condescending comment and completely ignore my concerns about my balance, speech, fatigue etc under real-life conditions. Sometimes I wonder if I’m having a relapse, or is this just a bad patch and a pseudo-relapse? but I don’t want to be patted on the hand and told how much worse it could be, so I don’t ask for an appointment. It was good to read this - very validating. UTIs and minor infections make things worse too, as per last comment 👇🏽
After treatment with steroids in hospital, along with most of the side effects you noted already, were weakened teeth resulting in extra dental work and several skin cancers (basal cell carcinomas) within 12 months of steroids. I am fairly certain I will never have steroids again. As to pseudo relapses, I get MS symptoms with UTIs and flu/cold viruses. I also get depressed and feel doomed when these symptoms return thinking that I am getting worse but am always pleasantly surprised that I go back to my normal baseline when the infection is over.
I had a very minimal UTI that I could hardly feel that put me in the hospital for 3 days with exacerbation of severe disequilibrium and oscilliopsia. They wanted to push steroids on me until I insisted they check my urine as I began to feel slight frequency and dysuria and after 3 doses of antibiotics all symptoms subsided. On a similar note, why does lack of sleep or frequent interrupted sleep cause such severe exacerbation of symptoms? Is this just me? I have 2 little kids and I swear they have a conspiracy to take turns waking up at night 😂 and when this happens I get significantly worse disequilibrium until I get some good uninterrupted sleep.
No loss of sleep or poor sleep - a big issue for me - makes a huge difference.
i am a notorious poor sleeper. I get maybe 3 hours of uninterrupted sleep at a time. so every night its a series of naps... 2 hours, then an hour then maybe 3 then 2 then i just aggravated and get up.. every.single.night. none of the sleeping medications work for more than a few hours.. maybe 4 and then i wake up. I am always tired and have been known to nod off at my desk during the day.. it;s horrible.. and coupled with the "normal" MS fatigue, it is crushing
It’s awful! My sympathy, sine I have little else to offer!
Since
Hi Prof G,
I’m a young female (30) who was diagnosed with probable RRMS 8 months ago. Brain MRI showed 3 T2 lesions (subcortical & infratentorial) no Gd enhancing lesions. MRI cervical spine showed no abnormalities, CSF was OCB positive, neurological exam was normal. I was also screened for NMO & MOG - these were negative. My only symptom was episodic vertigo & nausea - this was the reason I found myself seeing a neurologist in the first instance. The vertigo attacks ( I have had 4 attacks over the past year) would come on very quickly & last approx. 1 - 2 hours typically & would always conclude with me getting physically sick & like a light switch, the vertigo dissipates once I get sick & then I get some sleep & when I awake it’s gone - my head may feel a bit woozy / scalp sensitive for a while afterwards, but that resolves itself overnight. I don’t know if these vertigo attacks are MS related or if I have a vestibular issue also ? None of my vertigo attacks have lasted longer than 1 - 2 hours. I started Gilenya about 6 months ago & I have had one vertigo attack since starting Gilenya.
These attacks sound very much like vestibular migraine and are not typical of an MS relapse at all.
Definitely think I had an ‘event’ following Covid. Whether relapse or pseudo is tough to call. R leg symptoms worsened, as did balance. Burning sensation in right foot and ankle which is new for me. Neuro thinks likely relapse. It will be interesting to see what next MRI shows. I definitely avoid steroids. Have had enough of those and always decline if I can get through without.
I've only had two of five relapses confirmed by MRI. All were pre-diagnosis and most happened while I was waiting for a referral to come through.
In terms of heat-related symptoms, half an hour seems like a long time for anyone to be out in the middle of summer in the middle of the day! I say that though in recent years I have gotten into ultra running. Ultra races tend to happen when the days are longest and I have run in some scorchers - three races in over 30 degree temperatures. Heat actually does affect me and always has, just not in an MS way. I feel sluggish. In my native New Zealand I can't go outside much in summer - in my childhood due to pale skin and the ozone hole. In my adulthood due to polymorphic light eruption - fortunately not something I experience here in the UK, probably due to higher levels of pollution blocking some of the rays. (Of course now I think about it I should probably mention it to my consultant - and I'm trying to remember if this started before or after I started taking Tecfidera. I think though it's more to do with going from winter here to midsummer there)
Though sun exposure doesn't seem to trigger my MS symptoms I think there is a hormonal link for me but I only realised it recently. I'm going to start logging my fatigue to see if I can find a link.
Whenever I get a cold my ms gets worse ..it then recovers . Surely this is a case that would now be proscribed the new anti virals
Will unprecedented, totally disabling fatigue be considered a relapse?
The fatigue is such that any effort, mental or physical, is almost impossible. Napping or sleeping doesn't reduce the fatigue.
This fatigue has gone on for over a week now, it seems to be getting worse, and such fatigue has occurred for the first time.
Body temperature is normal, there are no signs of any infection.
Other MS symptoms have perhaps worsened too, but the main problem is fatigue and weakness.
Would this be considered an acute emergency? What could be the immediate treatment?
1998: I was born a completely healthy baby on my due date.
2007: My first symptoms began including difficulty sleeping, anxiety. (8 years old)
2008: The joint pain in my legs began, came and went. (9 years old)
2009: I had a sudden increase in joint pain, but at that point, it was all of my joints. (10 years old)
2010: My pain increased and was very debilitating. (11 years old)
2011: I was diagnosed and treated for JIA (Juvenile Idiopathic Arthritis) with both Methotrexate and Embrel. (12 years old)
2012: The diagnosis of JIA was concluded to be incorrect, and I was then diagnosed with Fibromyalgia and told there was nothing could be done. (13 years old)
2013-2016: I continued to have exhaustion, inability to sleep, random bouts of anxiety, and a lot of pain. But I was done going to doctors and had given up on answers.
2017: I lost vision in the left eye and after my first brain MRI and Lumbar Puncture diagnosed with Multiple Sclerosis. There were 25 brain lesions. (18 years old)
2018-2019: I began experiencing vertigo and migraines. I was on Tecfidera which caused me unbearable side effects, but I never had any new or active lesions.
2020: I began on Vumerity with no side effects. I had chest pain so intense that I was unable to speak for months. And I began having leg weakness as I'd never had before, necessitating the use of a cane. I was sent to physical therapy as no new activity was found on scans. (22 years old)
2021: I progressively lost the ability to walk throughout the year, and needed not only a cane, but later, a wheelchair. (23 years old)
2022: Recently I have been able to walk more and more. It's not very steady, not great (yet!), but I am walking again.
When I was diagnosed with Relapsing-Remitting Multiple Sclerosis in 2017 they put me on Tecifdera which I stayed on for as long as I could handle. I was very compliant with taking my treatment, but the side effects were causing me extreme stomach cramping which was debilitating.
In February 2020 I was switched to Vumerity, and I'm not experiencing any side effects. I’ve never had any new or active lesions since diagnosis.
Because in 2021 I began steadily losing the ability to walk, they believed I was having an MS relapse. After steroid infusion, and 18 days of oral steroids, and months of physical therapy, I continued to worsen. I experienced myoclonus in my legs so bad that I was unable to put one foot in front of the other, knees buckling, and loss of control over them. I also began experiencing moments when I had no control over my hands, unable to grab a spoon or my toothbrush.
Doctors said that my increasing disability was concerning but does not match what they see on scans. My nurse practitioner at the time suggested I change from Vumerity to Ocrevus or Tysabri but ended up deferring to my neurologist (Dr. Ingrid Loma-Miller)
That neurologist (Dr. Ingrid Loma Miller) however was leaving the practice and I now have a new neurologist (Dr. Krzysztof Romanowski). During the transition, they suspected a possible neuromuscular condition, and together they referred me to a neuromuscular specialist (Dr. Adel A. Boulos-Mikhaiel) who did an EMG which came back normal. He explained that the neuromuscular connection seemed fine. And he suggested that all of these symptoms could be side effects of Vumerity or MS progression that cannot be seen on current MRI technology. And he has referred me to Dr. Myla D Goldman, M.D., M.Sc. at VCU in Richmond, VA for an appointment in late April 2022.
At my latest visit, the new neurologist (Dr. Krzysztof Romanowski) explained that the MRIs and EMG rule out all physical causes, and for this reason, he now sees no need for a stronger treatment or any further follow-up. He suggested that this could be a Functional Neurological Disorder and could just get better on its own as time goes on.
I do have times of improvement when I can walk with a cane around my house, but to go any distance longer than that I need a wheelchair.
Has this all been a relapse? Or is this something else?
Signed,
Very Confused
omgoodness! your story is so similar to mine. I went undiagnosed for so many years. or misdiagnosed with fibromyalgia, and other things and at one point had a doctor tell me i was imagining things. When I started having cognitive decline in 2013 and got lost going to a grocery store i went every week for years, my then doc sent me for a CT of my head. It showed multiple lesions in my brain but because i was on Medicaid thru the state of FL at the time and they refused to cover an MRI, it would be another 2 years before I was Dx'd. When I was eligible for Medicare I got a real doctor and she was mortified that I had not been sent for an MRI after reviewing the CT scan and sent me immediately and didn't wait for results. She referred me right away to neurology and w3ithin a couple of months with further testing was Dx'd with MS. At that time i had over 100 lesions in my brain. Now with progression ongoing i have more than 150, including 6 on brainstem and 7 in cervical spine. I cannot help but wonder sometimes what would have happened if even one doctor along the way had dug deeper and thought to do a scan.. this could have been treated for decades.. I started having symptoms shortly after the birth of my daughter. She turned 35 last month
I've only had one MS relapse (which affected my left side), I sometimes have minor numbness there but it correlates with certain menstrual cycle phases. So, I already know that sympton is coming certain days of the month (usually a pattern with estrogen that I've noticed).
But, my POTS and IST give me orthostatic flares too.. Could this dysautonomia flares be MS flares? Do you know if POTS or IST can be correlated with lessions?
And btw.. Why are hormonal changes related to pseudo flares? Seems interesting to me and also do that means that when those hormones are gone (as in menoapuse) these pseudoflares stop?