Is this normal for Myasthenia
 

Things are getting worse here and we really don't know what is going on. Is it too much medicine or too little? The symptoms seem to be the same.

My husband has had Myasthenia Gravis for about 3 years now. He takes 60 mg of Pyridostigmine four times a day and for about a year now 5mg of Prednisone four times a day. He used to manage it quite well with a nap in the afternoon but now he is constantly tired.

He wakes in the morning, takes his pills and goes back to sleep for a couple of hours. When he gets up he can barely manage to keep awake for an hour before he is crashed out on the sofa. He will sleep for an hour or 2, take his next dose then go back to sleep for another hour or 2. Although he manages to stay awake for a few hours after this he doesn't actually feel better. He has this feeling of total exhaustion. He will need another nap of an hour or 2 mid evening. So sometimes he sleeps for over 6 hours during the day.

He can barely walk right now. It has been getting steadily worse for the last 3 months and twice his legs have just given out on him. He has lost a lot of muscle mass, his legs are like sticks. His ankles hurt and sometimes appear swollen, he also has the classic prednisone "moon face".

Is this the way it usually goes? Unfortunately our neuro is not really very communicative, we get our instructions and that's it. We haven't seen him for a while because of the virus and we aren't keen to pay him a visit even if he is back at work. He's on the 9th floor and an elevator in a hospital sounds really risky to me.

Any feed back from people with similar experiences would be appreciated.

Rhod: Hi again, I posted this in the M.G. forum, did you see it.

Myasthenia Gravis | Dr. Weil's Condition Care Guide

Hi Caroline,
Thanks for this, I did see it as I am constantly looking for more information. I am not happy with the way things are.
Diet wise my husband eats very little. I have been keeping a food and drug diary to see if we can detect a pattern but so far nothing has jumped out except that this all seems to have got much worse since being put on Prednisone. For three months now he has hardly been able to walk at all even immediately on waking in the morning. I thought that improvement after rest was the "key" diagnostic symptom. Rest only has a minimal effect on him, after a "nap" he can keep awake for roughly two hours but he doesn't actually feel wide awake even then. He doesn't have the classic drooping eyelids which was his very first symptom so we know what we are looking for, he just falls asleep. I'm sure there is something else going on here but I have no idea what.