I have 3 doctors I see on a regular basis. I saw my GP (internist) today. I have 2 new skin cancers that makes 4 this year. I have a regular neuro who I love. He listens and is not afraid to admit he doesn't know and has referred me for second opinions. My 3rd Dr is a neuro-muscular dr at the ALS center at a large hospital. He is brilliant but a jerk. He normally gives me a very detailed exercise routine and compares notes with my other visits. His exams take at least 1 or more hours. I only see him when my regular neuro suggest I see him. He is highly thought of in the MD community. I think he went to school with Dr Howard. I do have a copy of Dr Howards book which I find helpful.

Now for your question on how I feel. When this all started 2 years ago I thought I only had double vision. But after a visit to the neuro-muscular he said my MG was generalized. At that point I was capable to do whatever I wanted. I will use ping-pong as example. When this started I could play almost constant for 2 hours. My legs would get tired and that could have been a hint. Today I can only play for only 15 minutes then I have to stop and rest and catch my breath. This MG progressed as follows: double vision, weakness in legs, swollowing issues, breathing issues with activity, and latest is weak voice as I get tired. So yes I am way worse today than when this started.

As for the drugs, I took Imuran for one year but it made me so sick we had to stop it. I lost 35 pounds. What is really funny when I stopped taking it within a week I could eat and felt like Superman. This lasted 6 weeks then it was back to my weak self. My neuro said the Imuran was working but the side effects masked the results. I am currently on Cellcept (7 months) plus the usual Mestinon, IVIG and tapering off Prednisone (current 20mg). I am convinced that mestinon and IVIG have done nothing for me. I stopped my mestinon 180 time release and can't tell any difference, same with the 60mg which I have missed with no ill effects. I can't recall exactly how many IVIG's I have had but it is a bunch.

Now for my blood work. My first bloodwork was negative. 6 months later I was positive for binding. Then 6 more months and I was positive for binding, modulating, Striational and calcium channel. My wife thinks my problems are coming from the striational antibodies.

As for my heart I see a heart Dr once a year and my blood pressure is excellent for my age. As you can see my wife drags me to any Dr she can find. You may have forgotten but my Mom and 2 of her sisters had MG plus we now think my sister has it also. Phew my finger is tired.
Thanks
Mike