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I have had periods of that symptom. Was screened for MS and it was not. As of late, I have a few docs that think it could be MG, but am having a hard time getting a dx for that due to negative Achr antibodies and local docs wont do any further testing. As a side note, I find it interesting that I have seen ME patients (on another forum) say that they are on Mestinon and responding to it. That is a med generally used for MG, although obviously not exclusively.
edit:spelling
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MSEsperanza
Senior Member (Voting Rights)
Too many important threads to follow for me at the moment, so this comes late and a bit muddled:
Did those of you who experience temporary weakness, stiffness, paralysis or coordination impairments in some limbs or other parts of the body document these impairments by video?
I did this (my partner filmed me) with the latest type of movement impairment I now experience regularly. Docs and physiotherapists who saw the video said this was "motor fatigue".
My docs assume that the motor fatigue "somehow" has to do with my white matter lesions. It's strange though that all nerve conduction tests were normal.
(I have multiple white matter lesions--some radiologists saw them not only in the MRIs of the brain but also of the spine and interpreted them as showing the pattern of a a chronic inflammatory CNS process, others did not, but this is an entangled story, see here (members only).
Even though I still do not know what is causing my temporary movement impairments it helped me to know how they are named in medical language. Also I felt taken seriously by my doc who advised to go to the hospital immediately if new neurological symptoms occurred. (I understood that an acute flare-up of a chronic inflammatory process could be easily ruled out with an MRI.)
Edited to add: I think sometimes we perhaps describe our symptoms in terms that mean different things in medical language and can be misleading. That's why a video could be helpful.
Did those of you who experience temporary weakness, stiffness, paralysis or coordination impairments in some limbs or other parts of the body document these impairments by video?
I did this (my partner filmed me) with the latest type of movement impairment I now experience regularly. Docs and physiotherapists who saw the video said this was "motor fatigue".
My docs assume that the motor fatigue "somehow" has to do with my white matter lesions. It's strange though that all nerve conduction tests were normal.
(I have multiple white matter lesions--some radiologists saw them not only in the MRIs of the brain but also of the spine and interpreted them as showing the pattern of a a chronic inflammatory CNS process, others did not, but this is an entangled story, see here (members only).
Even though I still do not know what is causing my temporary movement impairments it helped me to know how they are named in medical language. Also I felt taken seriously by my doc who advised to go to the hospital immediately if new neurological symptoms occurred. (I understood that an acute flare-up of a chronic inflammatory process could be easily ruled out with an MRI.)
Edited to add: I think sometimes we perhaps describe our symptoms in terms that mean different things in medical language and can be misleading. That's why a video could be helpful.
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Inara
Senior Member (Voting Rights)
I cannot film these events because I'm mostly alone when they happen, and I cannot say when they happen. But I try to remember it, it's an idea.
It definitely feels like "brain and nerves exhaustion" (motor fatigue) although there could be an energy part in it. But I don't have lesions in the brain (well, I was told; to be honest, I don't think the best tesla units were used, there were parts where it was discussed if they were real or artefacts, and it was decided it was artefacts; a good machine wouldn't show artefacts?). And all nerve conduction tests are normal, too.
It can happen without physical exertion, being in PEM or having done too much cognitively can trigger it as well. As soon as I've rested it disappears. Well, up till now, it's getting worse over time.
And what Jaime explains sounds very different.
Oh ME
MSEsperanza
Senior Member (Voting Rights)
I try to be clearer....
Actually, I don't think my movement impairments have to do with the white matter lesions. It's only speculation by two of my docs. If I understood properly, nerve conductions should show at least slight abnormalities if the white matter lesions were to blame.
It seems to me that most pwME develop diverse types of movement impairments in the course of their illness, some seem similar to mine, others not so much. Since white matter lesions aren't a common feature of pwME and mine couldn't be proven to be connected to my impairments, since the impairments stopped to be progressive and mostly get better with rest, I still think they are most probably ME-related. It's good to have a name for these weird symtoms and to know what to do when the old symptoms get worse or when new symptoms occur, though.
Also, I'm not sure whether my other movement impairments (not filmed so far) would also be categorized as "motor fatigue". I would describe them as muscle fatigue, occurring with exertion as a weakness, followed by stiffness and/or muscle cramps (mostly in hands and feet). But first I also thought my strange gait, now interpreted as motor fatigue, was actually due to muscle fatigue. And then I also experience muscle stiffness sometimes without prior exertion. So I really don't know whether all these movement impairments are different types of motor fatigue or the motor fatigue is just a different type of whatever. (Edit: To simplify matters, I just call all those symptoms "motor fatigue" when someone asks me, out of concern, what I "have".)
Heartfelt wishes to all who have not got checked their impairments due to bad encounters with doctors and good luck to all who still try to get their symptoms checked!
@JaimeS , especially good wishes to your injured hand.
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leokitten
Senior Member (Voting Rights)
Hi @JaimeS - I’ve had some left-sided weakness due to ME. In my first year after onset, when I was still trying to overcome the disease by ignoring it and exercising, my left leg would sometimes give out completely when jogging on the treadmill or when walking after exercising. Still to this day my left side feels weaker but only during PEM do I really notice it.
My theory on this is that the brain and body have developed natural physiological asymmetries which is normal... BUT the metabolic dysfunction brought on by ME cellular energy production makes it so much more apparent. When everything is barely working then asymmetries or naturally weaker parts of the body cannot cope as much. Hope it makes sense.
My theory on this is that the brain and body have developed natural physiological asymmetries which is normal... BUT the metabolic dysfunction brought on by ME cellular energy production makes it so much more apparent. When everything is barely working then asymmetries or naturally weaker parts of the body cannot cope as much. Hope it makes sense.
JaimeS
Senior Member (Voting Rights)
They're on the diagnostic criteria (CCC)! I have them.
Heartfelt wishes to all who have not got checked their impairments due to bad encounters with doctors and good luck to all who still try to get their symptoms checked!
@JaimeS , especially good wishes to your injured hand.
Thank you!
JaimeS
Senior Member (Voting Rights)
Thank you, I've had very similar thoughts on this: might just be an exaggeration of the way that one side is always stronger than the other... but it's gotten pretty extreme.
Indeed, we should not normalize symptoms that are clearly abnormal. Fall sometimes occur, mostly very young and very old, but they are typically not normal in the twenties, thirties, forties and even fifties, especially when we talk about falls related to one sided weaknessses.
leokitten
Senior Member (Voting Rights)
I have them too. I forget the exact terminology on the radiologist’s MRI report, something like “unspecified white matter hyperintensities”
Alvin
Senior Member (Voting Rights)
Sorry to hear about your fall @JaimeS
I hope you will be okay
I've had a few lately but fortunately no damage the cryoprator could not fix
Its weird, its as if my balance for a split second fails and before i know it i'm down. Not sure if yours is the same.
I don't know what part of the brain mine are in, i have the images but lack the ability to interpret them.
I hope you will be okay
I've had a few lately but fortunately no damage the cryoprator could not fix
Its weird, its as if my balance for a split second fails and before i know it i'm down. Not sure if yours is the same.
I also have multiple supratentorial white matter lesions predominantly subcortical and deep white matter with a multilobar distribution (whatever the hell that means).
I don't know what part of the brain mine are in, i have the images but lack the ability to interpret them.
leokitten
Senior Member (Voting Rights)
Sorry @Milo if the wording of my post appeared as if I was normalizing these symptoms, that wasn’t what I meant or intended. It’s just my theory based on analysis of my own symptoms, which are definitely not normal.
I was trying to describe that during human (and probably all bilateral organism) development, natural differences develop in the brain and sides of the body. When the body is healthy and working normally one doesn’t really notice or the body easily compensates.
Though when ME develops and there is this radical and profound dysfunction of cellular metabolism then suddenly every tissue and organ in your body is struggling to function. I believe the areas in your body that developed slightly weaker than their adjoining side become very apparent and malfunction worse.
Hi @leokitten I was in no way targetting you- but i felt the need to remind readers that this is not normal and that each individual should discuss these symptoms with their doctor, as from my point of view it deserves further investigation and rule out differential diagnosis.
leokitten
Senior Member (Voting Rights)
For mine I believe they used the word non-specific or unspecified because the white matter hyperintensities are in a number of different areas, so couldnt attribute the pattern and locations to those of known diseases such as MS.
leokitten
Senior Member (Voting Rights)
Sorry about that, I’ve been in a crash for two days now and one symptom that always gets worse with PEM and much worse during a crash is the ability to read, understand, and interpret text. Writing also takes me much, much longer and I cannot seem to get grammar right.
I’m just so tired of my body hurting in bed and reeling from the crash that I thought I should take my mind of things and browse S4ME. Probably not my brightest decision.
I understand too well. My brain feels like cottonballs and can’t seem to type anything right.
Thank you for checking with me. We are all in the same boat here, all sick, most with a lot of trouble accessing health care when we need it the most.
Take it easy, i hope you feel better soon.
Unfortunately not. Loads of other people have seen them (even a medical assistant, recently, who said I was "freaking [her] out" as she apparently thought I was going to faint [which I didn't feel was likely--my fainting reflex is broken but I didn't even have presyncope particularly]).
I have lesions on my brain, too. They are not MS. Some are on my occipital lobe. I don't recall how the reports described them. They probably did say nonspecific.
BeautifulDay
Established Member (Voting Rights)
Yesterday, at the grocery store I had momentary weakness in my right hand as I was putting a jar of tomato sauce into my cart. I ended up dropping the jar and there was broken glass and tomato sauce all over the floor. My husband and I are so used to these incidents happening that we just smiled and laughed it off. No reason to cry over spilled sauce. Happily there was a grocery store employee on the aisle who also smiled and quickly called someone to clean it up.
Our youngest who is 9 years old is having terrible fatigue today and crawling up the steps. I have days when my legs are so weak that walking up steps feels like each step is like lifting a huge cement pillar. Even back when I was tiny I had episodes of such weakness. Then there would be days and months where the leg weakness would go away.
How could anyone think that de-conditioning was the cause and GET was the answer? Did the doctors recommending GET even listen to their patients? Thankfully, those days of ill informed doctors is behind our family (for the most part).
Our youngest who is 9 years old is having terrible fatigue today and crawling up the steps. I have days when my legs are so weak that walking up steps feels like each step is like lifting a huge cement pillar. Even back when I was tiny I had episodes of such weakness. Then there would be days and months where the leg weakness would go away.
How could anyone think that de-conditioning was the cause and GET was the answer? Did the doctors recommending GET even listen to their patients? Thankfully, those days of ill informed doctors is behind our family (for the most part).
JaimeS
Senior Member (Voting Rights)
No more falls! I did get an assessment from a doctor who was more willing to try some things out. She mentioned that the muscles on one side of that left leg seem barely functional, while the other side is very tense. I've started being very mindful about walking with my foot pointed totally forward when I feel weak and wobbly. It may be that some muscles aren't ennervated very well and so I've started relying on the rest of them more and more. Of course this only weakens the already-weak ones even more. By not 'leaning' or pointing my toe in an unusual direction, I hope to re-strengthen them to the extent that's possible. There are strengthening exercises as well.
This has already cut back on the number of times it gives out, though it hasn't stopped entirely.
Doc also suggested I get an EMG due to some minor lack of/decrease in sensation & response, but whooooboy I started to have one of those at Mayo and could NOT tolerate.
Doc suggested valium during the test.
Whooooboy people in my family have some serious issues with sedation. (EDS?) We don't tend to clear it. My mom is always asleep ages longer than they predict based on her body weight and is effectively in and out of consciousness for the next 24 hours. I have never been sedated and have no idea what could happen to me.
There's no perfect storm of terror for a pwME than:
- Taking a new drug
- At the dose a rando doc thinks is "appropriate"
- With a rando doc who's never heard of ME or EDS or POTS
- With the distinct possibility they'll give me something inappropriate if something goes wrong, and make it worse
- While cognitively compromised
- While going through something that initially made me scream in pain
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