Wellness

[QuinnPenny]

my daughter was diagnosed when she was 12 yo.... She is now 42.  She was in remission until recently when she is having heart problems. Does anyone have this autoimmune disorder?

[Mathgal]

My father has had the disorder for over ten years and I was mis-diagnosed as having it when I was 6.  My father's condition is generalized MG.  It started as just ocular but a heart doctor gave him a nuclear stress test and it threw him almost into a myasthenic crisis. He went through quite the ordeal.  He is now in remission.  He takes prednisone and mycophenalate. 

There are really different types of MG.  Some people have ocular MG and others have generalized MG.  Some people have the "typical" MG antibodies and others don't.  Some people are positive for the musK anitbody and others aren't.  Some people have an enlarged thymus gland (and/or cancer of the thymus gland) and others don't.  And these are just the subtypes that the medical field knows about. 

The treatments for each type will vary and the treatment for each person will vary.  The key is finding a neurologist that specializes (or at least knows/understands) MG.  My father's first neurologist wasn't really experienced in generalized MG as severe as he had it.  He ended up in a level 1 trama center and eventually was placed under the care of a doctor that conducts studies/drug trials for MG and ALS.

I can answer some questions, but I would also suggest checking out the national MG foundation website.  There are many support groups across the country with contacts that can get you local information for doctors who know how to treat this disease.  Unfortunantly, many doctors (even neurologists) will never see/treat a patient with MG...especially ones who have more severe versions of the disease.

[Tinkrbl44]

The only thing I recall about this is that Jacqueline Kennedy's second husband, Aristotle Onassis, had this disease.

[MaggieMack]

@LilacTree posted about a new book on autoimmune disease in another thread here in Wellness. I bought the book for my Kindle app and am still in the first couple of chapters. It is fresh off the press and seems to be filled with new info. I remember seeing a chapter on MG when I looked through the contents. It might be worthwhile for you to look into @QuinnPenny. Best wishes for your daughter. 

[Shelbelle]

Also, actor Roger Smith, hubby to Ann Margret has had it for many years.