Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
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Dermatomyositis

DebbieF777
DebbieF777
Well, a little paid attention diagnosis that came up in my evaluation/hospitalization was that I also have this disease. Frustrated, I researched it a bit today, and now I understand more about why she is treading so lightly with me, but I just thought it was an autoimmune that was causing my skin rashes.

Seems it can cause some serious lung and kidney problems, this is why she is so hesitant to increase the IVIG load. Too much on me. She kept saying this, but I thought she was referring to my type II diabetes when she kept saying she was worried about causing kidney failure.

Anyone else have this or heard of this? I am at least not so frustrated now. I guess she assumed I knew about all about this disease. Other than ugly skin lesions, that was all I knew. Will have to read more.
bweeds
bweeds
Debbie,
I hope this is a premature diagnosis. While it is true that there are gradations of this autoimmune problem, I don't remember your posting about pain, which has been a prominent symptom of the few cases I have been associated with (and all my information is old). We are more likely to have any of the other autoimmune problems and differentiating one from another is not always easy. b.
DebbieF777
DebbieF777
I have had pain off and on almost my entire life with autoimmune issues, but I cannot say anything severe at this time. My back, hips, and legs wake me up frequently, but that is a norm for me, not new. I will have to question more in August. I've never had a biopsy of muscle, just the antibody testing. But if it is the reason with the diabetes that she is treading lightly, I wish she would just quit worrying. The IVIG does help the rashes/lesions (as does topical steroids.) This does explain the marbles in my muscles. I get pea size lumps in muscles. I still really want a higher dose of IVIG. Maybe after the pulmonologist. She has me on a wait list for him.

It would be nice if this would be a miss and not a hit. Then, to get it off my chart.