For mods: yes this is the same question as posted in "neuromuscular" but I think it's better to ask to MG patients. I cannot delete the other post. Sorry if this is not correct!.

I wonder if there's someone here who recognises one of my most important problems.

MG is described as a "weaker when you move, stronger when you rest" disease.

But I have a different kind of weakness, besides the "normal MG" weakness, and it's one my docs can't clarify and why they think there's something different going on.

It's a typical kind of muscle weakness: a general muscle weakness which is caused by resting after exercise.
It's not the exercise, nor the rest that makes me weak, it's the combination.

An example:
When I walk, I feel my muscles getting tired. The more I keep forcing myself to go on, the weaker I feel myself getting. Ok, so far so good, that's normal for my MG. But, the big difference, is I get my most severe general weakness, is when I rest after the walk. It's weird I was first able to keep on walking (yes it got more difficult with every step I took, but with all my fighting I was still able to go on), but once I rest, I can't even replace my legs when they're lying funny. I'm terribly weak all over.

It's not an option not to rest after simple exercises.

Does someone recognise this?

This is exactly how my MG acts when I over do it. If I do a small amount of activity, no problem, rest makes me feel better. But if I do way too much, like standing or walking for a long time, I feel worse and worse as the activity progresses. But a small rest does no good, I am actually worse. One time it was so bad, I fell over when I stood up and could not move my legs at all. I had to lay there a long time and then use my arms to pull me across the floor to a chair and pull me up. My legs would not work at all. It took a full week to recover. I learned never to over do it again. Even if you can manage through the activity, you will pay for it later, sometimes for days.

I went to a day trip to the shore and ended up in bed for 2 days, I could not function. I call it an MG activity hangover. I think it is actually part of the "Mary Walker phenomenon".

kathie

Try this link for a better explanation of the Mary Walker phenomenon: http://www.ncbi.nlm.nih.gov/pubmed/123143.

kathie

I'm sorry, I can't remember if you tested positive for the AChR antibodies. If not, you should be tested for LEMS (Lambert Eaton Myasthenic Syndrome), because I've read that it sometimes acts this way. I suppose that even if you're AChR-positive, you might as well get tested for LEMS as well--I know that sometimes people have more than one type of antibody. But I think the Mary Walker phenomenon is a good guess, too.

Abby

Thanks all!
I do not really understand this Mary Walker phenomenon. Can someone explain it to me?

abby, yes I was tested positive for achr (and musk), not sure if I was tested for LEMS though.

I also wish that I could understand the Mary Walker phenomenon. I understand it to mean that when you use one muscle excessively, all the others turn to jello as well. I just can't understand why.

Oh but that's something familiar.
When calling (talking) not only my mouth and tongue get tired, my eye closes too.
When walking, I do not only get a funny, drunk walk and jello legs, I also get a weak diaphragm.

Ravenclaw, Lambert Eaton Myasthenic Syndrome (LEMS) is a form of myasthenia but it is not myasthenia gravis. In LEMS a different part of the neuromuscular junction is affected and one of the key differences between MG & LEMS is that in MG your muscles get tired with use, in LEMS however your muscles get tired when they are rested. There are different blood tests for LEMS tat are not the same as are used with MG.

You need to let your neurologist know this difference as the treatments are different and with LEMS there is a significantly higher risk of developing cancer.

Here is a exert and link to an article discussing LEMS publishes on the MDA website:

"Unlike weakness in myasthenia gravis, weakness in LEMS temporarily improves after exertion."

http://mda.org/disease/lambert-eaton...s-and-symptoms

Be sure to let your neurologist know that you have more muscle weakness when resting, it is a very key and unique trait seen with only LEMS

Joe

Thanks Joe! So much.

Some signs against it, I
-surely do have MG. I do have the antibodies.
-have tried 3,4 dap which is the medicine used for LEMS, and it didn't do a thing (besides side effects).
-have problems breathing and with my facial expression, I read they do not often appear in lems patients, if they do, they're mild (mine are not mild).
-do not have cancers at the moment (that i know of, of course)
-am in my twenties. Mostly lems patients are a bit older.

I do however,
-have the problem where I get more weakness when I rest, after exercise
-have my MG weakness mostly from the cheeks-down (I'm not so ocular).
-have other stuff like constipationproblems and such.
-am worse in mornings, best in evenings (I figured this was due to taking the prednisone in the mornings)

Can you have both?!

What are diagnostic tests for LEMS, can this be found in your blood?

I would say my weakness definitely gets worse the more I do and mornings are usually my best time BUT I have found on more than one occasion that if I am out or I am doing something there are times that I can somehow "push through" the weakness for a limited amount of time and then it does seem to hit me later when I am resting which does make it seem like the weakness is getting worse as I rest? Is this anything like what you experience?? I usually find that if I have "pushed through" I need more extended rest after this to recover and see an improvement again??

I hope you are all well