[L.A.]

My Mom has just been told she has this myasthenia gravis. Anyone heard of it?

 

[Sabrina67]

http://en.wikipedia.org/wiki/Myasthenia_gravis
Maybe this will help. Hope she is ok. Sounds like weakness....

 

[DAVID In Wisconsin]

Aristotle Onassis had it.

 

[Marcia in MT]

My husband has it. It's under control with meds, but we need to be careful about anything that compromises his immune system (like a cold), as it will then flare up. He does get more tired than he used to (but then, neither of us is a spring chicken anymore, either), and he naps a little at lunchtime before going back to work.

Other than that, he is just fine and has no limitations.

 

[SageLady]

A friend of mine has it. Her muscles get really weak at the end of the day. Fatigue is a factor too. The disease causes fatigue and in turn the muscles get even weaker when tired. A daily rest time or nap is the best therapy. She has alot of trouble chewing up food at dinnertime, gets choked easily trying to swallow food, and most everything is alot harder for her in the evening. Also she tries to avoid getting sick. She had pneumonia once and wound up in the hospital with extreme breathing difficulty.

 

[KatSpradley]

A friend of mine has this and she had some sort of new surgery that isn't approved to treat it but seems to have worked...I will see if I can find out what it was

 

[Jesus Saves]

I have it. I've had it since I was 22 or so, I'm 34. I have had the thymectomy surgery. It helped at first, but not now. I get very weak, have trouble breathing, sitting up in the evening, etc. I take an immunosuppressive and Mestinon. I have recently added Mestinon timespan at night which has helped tremendously for the morning breathing. I get bad to where I need to be admitted to the hospital for plasmapheresis. This procedure helps alot but is VERY expensive. It can be managable, but you do have to be very careful to not get over fatigued or stressed or sick.

 

[L.A.]

Thanks for the information. I'm trying to read all I can find. This is scary to say the least. Mom is 76 yr and has always been very active. Now on good days she can go to the store for a short time at the most. She has to time eating with pill schedule and thats when she can eat. Most days now she can walk to the kitchen, then rest, walk to the bathroom, but sometimes doesn't make it in time. She doesn't complain, but she is miserable. I pray and hope. I'm still shocked I've never heard or this before. Again thanks.