[Anacrusis]

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?

[alice md]

Originally Posted by Anacrusis

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.

[Anacrusis]

Originally Posted by alice md

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

!!!!!!

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

[AnnieB3]

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!


Annie

[StephC]

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.

[scrubbs]

Originally Posted by AnnieB3

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

Annie

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

[AnnieB3]

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

[Stellatum]

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

[southblues]

Originally Posted by Anacrusis

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

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.

[Anacrusis]

Originally Posted by StephC

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.

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

Originally Posted by AnnieB3

Scrubbs, 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.Annie

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.

Originally Posted by Stellatum

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.Abby

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.

Originally Posted by southblues

But the whole process wanders around.

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