Originally Posted by Nightcrawler (Post 816987)

Confused,
Strangely you sound a very lot like me. I had a father and aunt with MG. My father was diagnosed by the neuro ophthalmologist (often our heroes), but went untreated for two years. He developed severe problems like his sister who died at 42, untreated. He died at 87, diagnosed at age 80. He was never treated aggressively and I don't know why. I saw his doctor because I thought he would have learned his lesson with our family and he ias a well respected expert in the field of MG. Both Dad and I are extremely strong especially for our ages. That doesn't mean that we are not also extremely weak at times and cannot do what we should be able to do given our basic strength, including breathing swallowing and walking. I was reluctantly given pyridostigmine and a rather wishy washy diagnosis of myasthenia. It is now a year later and you will be glad to hear that there is a doctor I saw this week at Vanderbilt who congratulated me on being the strongest patient in his clinic, said he was sorry for the weeds (I am an avid gardener) had no problem with accepting the diagnosis of myasthenia, and explained that since I was not planning on having any more children (I am 65) and my daughters are not, that testing for congenital disorder without more clinical direction would not be very profitable and that he thought it was autoimmune, and response to medication might be the easiest way to differentiate the two. I have had symptoms of this disease going back at least forty years and have been actively seeking a diagnosis for thirty five (off and on). The progression has been slow, but constant. Don't accept arrogance. I was told by Dad's doctor "myasthenia or nothing.". He was willing to go with nothing, but I was not. By the way his SFEMG which he interpreted as a borderline, the doctor I saw yesterday said was definitely abnormal and abnormal like myasthenia. I didn't even have to undergo the studies again. I have had the sleep, MRIs, blood sent to Mayo for antibodies, EMG all normal SFEMG reported initially as borderline abnormalities, but consistent and fluctuating eye findings and getting anxious before studies tended to make my clinical findings much better. I hope that is encouraging, not that any of us want to have this disease, but if we do, it is helpful to have a diagnosis so we can be treated.
Yaaay for clinicians that are physicians. nc