Making sense of myasthenic muscle involvement
 

For about 4 years I had progressive myasthenic weakness mostly in deltoids, neck, trunk, hands, fingers and could not turn a key in a lock, peel potatoes, turn pages, play a guitar/piano etc. I could lift my arms up to sides only twice. This all went into some sort of strange remission after reaching a peak in May 2011.

The fine motor skills that were affected began improving very gradually and now over a year later I can grasp and shake someone´s hand with adequate grip strength, make a fist, thread a needle, and so on. I can now lift my arms up 8-12 times, and with Mestinon, 35 times.

Swallowing, breathing and ocular problems did however sneak in with a complete life of their own and overlapped the other problems. They just seem to have stuck around these days.

Does anyone else have fluctuating muscle set involvement as well as fluctuating weakness of single muscles? Or is it just me?

It's just you. All the rest of us are in complete remission and just come here to get some attention.

:Bawling: :Noooo: !!!!!!

I mean does myasthenia fluctuate from bulbar involvement to general and back to bulbar - just as an example.......
And also do people have muscle weakness in one set of muscles that almost disappears after some years in that set of muscles but continues in another set.


Anacrusis :)

Yes.

There are times when talking is okay. And then sometimes I can talk a little and not be able to close my mouth, which particularly sucks while I'm sleeping.

Some muscles can have fairly constant weakness, like hands. Why? Because you use them a lot every day.

MG is not predictable, which is what makes it a truly frustrating disease!

:hug:
Annie

I think that the whole muscle aspect is unique to each of us. I for one think that the reason I had such severe hypersensitivity to touch (excruciating) when I was paralyzed had to somehow relate to the fact that when I was struck with GBS I was very very muscular (was into bodybuilding - not the unnatural this was 1984 but for female was very well defined and strong). I now notice that my legs are most affected by MG (pain, weakness) and for as long as I can recall I have always had very muscular strong legs. I do not understand the connection but there must be some and I would suggest that perhaps another person with MG who had same circumstances (strong muscular legs) may have opposite effect (i.e. their legs are least affected by MG).

I dont know and really never did want to know. I realized today I am supposed to be preparing for board certification next March but havent started because I have, like everyone else on here, been forced to become certified in learning how to deal with MG.

This does not seem to be the case for me.

This morning I had some difficulty eating my breakfast. Maybe an indicator of how my day was going to be. I took my dog to the dog park. - Walked the 200 from my car. - Stood for 3-5 minutes talking to others. - Sat on a bench for 15 minutes watching my dog run around. - Then walked the 200 ft. back to my car.

That's probably all the activity for me today.

I do not believe I have fluctuating weakness of single muscles.

I do believe I have fluctuating muscle weakness throughout my body.

Just the opposite of Annie.

scrubbs

Scrubbs, It's not the opposite really. I can start out a day okay and get worse after just walking up a flight of stairs. If I go out and do errands, I know that when I get home, I'll have to just lie down to recover. Sometimes, I have to sleep to recover. MG can "put you" to sleep you can get so overall weak. After I've gone out to do errands, I can have what I call "one day" and "two day" payback. The second day is always worse.

For me, it's highly variable. It is, however, a relative constant. There are no "MG-free" days.

If none of us have fluctuating weakness of a single muscle, then how can neurologists do an upward gaze test and our eyelids droop? Or push against one quadricep and it gets weaker after each push? Maybe the voice of a single muscle gets lost in the harmony of all of the other muscles being weak.

Just my thoughts, not trying to be contrary.

Annie

I started out with one noticeable symptom: weak side muscles. The doctor said I had an inner ear virus, because they put me off balance. I walked swaying side to side for the first year of my illness. But for the past two years, I haven't really had that symptom. Sometimes I fall forward from the waist.

For a course of about year, my weakness headed down: swallowing troubles, weak neck, weak sides, weak hands, weak legs...I was hoping it would head out the bottom of my feet, and I'd be all better. But then it started at the top again.

A year and a half ago I was having trouble swallowing. Not any more. I haven't had that symptom for over a year.

I think I always feel some weakness in my neck and arms. But the weakness in my legs and sides/back comes and goes.

Abby

My weakness tends to wander around like you are saying. My hands usually do pretty well. Some days my voice totally goes and my ears get all weird. My legs may not be all that weak at those times even though I do notice that I may drag a foot a bit. Other days (like today) my voice is not that bad, but my legs are weak. On occasion my neck gets all weak and weird. My vision blurs pretty consistently in the evening and my eyelids, though always droopier than I would like and asymmetrical, sometimes they are not that bad. Other times they are totally flopped and it is hard to see out. If I get behind on my mestinon dose, it all gets worse. But the whole process wanders around.

Oooooo!!!!….good luck with changing brain gears asap then! (thanks for sharing those interesting but what must have been terrible symptoms of GBS)

Hmmmm…interesting.....
After a party (rare occurrence!) without alcohol (even more of rare occurrence!!!) - with too much standing and too much heat from a fireplace - I got ´payback´ in trunk muscles and ptosis a day late and it lasted about 5 days. I also got my myasthenic ´payback´ from non-MG friendly medications always one day late.

I put a question out on another forum once about which direction symptoms progressed, almost all the answers were from people with progressions from ´up-down´ but you are only the 4th person I know to have ´down-up´ progression.

I think I just didn’t know that – thanks for that confirmation sentence, Celeste!
I realized that my wandering weakness was so vague in the beginning that it´s only recently I even knew that a neuro is the person I needed to see and out of the 4 neuro appointments I have had in my life –none were to do with discussing how MG works – just a few tests and discussions about diagnosis. That special appointment with MG specialist is coming up shortly.....

What threw me especially about my hands/arms is that such a long progression to a peak and then the year of gradually restoring functions felt more like a slow recovery from a car accident than a fluctuating disease. I was under the impression that weakness attributed to MG would have a slightly faster tempo and be more erratic with its remissions......Thanks everyone so far :)

Mine is exactly as you describe!!! When it first started it was my eyelids and face.. and then a few weeks or months later it was it seemed EVERY muscle in my body (with the exception of my knees down)
After my 2nd IVIG my breathing problems (I coudlnt' even read a book to my kids without huffing and puffing before IVIG.. Only a few words would make me gasp for air and almost pass out in the weeks leading up to my hospitalization) they completely went away after my 2nd IVIG... until this past three weeks after having a nasty cough - I handled a week of the cough well, after that my trunk muscles were tuckered out!
A few months ago, I was choking on liquids, foods, drooling, and a very nasally voice.. I had a few IVIGs where they helped a little, then it would get bad again, and then another IVIG that completely took it all away again!! Now no problems swallowing at all, just hips shoulders and trunk weakness that is improving!
I don't understand it at all!! One thing that is consistent is that at the end of the day my vision is double and eyelids heavy.. especially the further away from IVIG i get! who knows!

Annie, I guess you are right. Even though I was really fatigued the rest of the day, my swallowing and chewing were normal and I had no blurred vision at all.

My swallowing, chewing and vision are the least problematic for me.

scrubbs

making sense of myasthenia muscle involvement
 

I have had MG for over 5 years now with many ups and downs. Lucily I have only had 1 crisis at the start of the disease.

After reading all of the responses, I agree with all of them. The one factor that seems to affect my MG is STRESS OF ANY KIND.

I find both neuromuscular diseases I have fluctuate between muscle groups, so its not just you. You have to admit that you walked into Alice's reply, though :)

:)

You have to remember though that I´m one with negative SFEMG and negative antibodies tests, and don´t yet have that relationship with non-mafioso physician! So sometimes – well actually quite often – I think that I will one day post something and someone is going to come along and say ´No, Anacrusis, that long recovery from that muscle set sounds more like you were recovering from mono rather than MG´……or….´You know what? The more we hear about your symptoms the more it seems to point back to CFS!´

So I see you know heaps from all your posts about the mechanisms of disease – I wish you luck in the parental and hospital staff front. One thing I learned that works a lot – use a strategy to make them think it is their idea and not yours!

Anyhow… I am really interested and hope others are, to hear about real examples and descriptions from people - not just that ´Well yes it moves from one muscle set to another, didn´t you know?´ When the muscle involvement has moved some place else, (for example with Abby´s swallowing remission) did it go fast? Do those muscles again feel as ´healthy´ as they were before she got MG now that the symptoms are in their remission? For me, when I´m not in a long period of swallowing problem weakness, it feels like something is still not quite right….clicking in epiglottis….other sensations that are not so much symptoms, just more like gentle reminders. :(

If this is stuff people already know then they are welcome to move onto the next post, which is what I´m going to do right now :)

the IVIG fixed me completely (nothing even felt remotely odd) the 2nd treatment.. but I am defintely far from normal since that 2nd treatment... I don't think about my swallowing most days.. but it's not quite like it used to be, either is my speech.. i have certain words like "yesterday" the st hasn't been quite normal in almost 2 years.. no one else can notice it but me, but it's an awful feeling to have speech or swallowing at any risk of impairment I think. i feel like when I have an exacerbation it can "attack" any part of my body, the same or different than the last time, and sometimes it goes back to normal othertimes it doesn't.. ugh who knows! !?!?!

Our functional abilities are the combined result of:

The degree of impairment in our muscle function.:(

The degree of adjustment to it. :)

It seems that it is impossible to adjust to changing levels of impairment,but this is not true, because there is some order in this chaos.

The degree of impairment is what you would measure objectively. (if you could do that). or semi-objectively (by some form of effort dependent test).

The adjustment is by: life style changes and symptomatic treatment which does not take care of the root problem, but by-passes it.

Adjustment is sometimes tricky because it should lead to overall improvement and not improvement in one function at the price of another; Not temporary improvement at the price of crashing.