Hi, I'm new here too and like your dad suffer from MG.

What I have found with this disease is although the set of symptoms are common, the way the disease affects individuals varies from patient to patient. Unfortunately, there doesn't seem to be one "cookie cutter" treatment. The way MG patients respond to treatments also varies - sometimes dramatically.

My original neurologist had a protocol he followed which simply wasn't working for me. After switching doctors I now have a wonderful neuro who is treating me based on what I respond best to. For example, prior to starting iViG I was only using Mestanon for a time. Thing is, he cautiously played around with the dose and it turned out I needed a very high daily dose spaced at exact times. Much higher than norm but it worked well - for a while.

I'm not suggesting your dad follow suit and increase Mestanon. I do, however, suggest making sure his doctor is "pulling out all the stops" to treat him based on his individual response to treatment, and is aggressively working on finding the solution that will fit for him. Until remission, it's an ongoing process, rather than a one stop cure but again, everyone is somewhat different.

You did mention how it's difficult for him to cope with the disease mentally. I can safely say it is definitely hard for most patients on a daily basis. One of the things that makes it so hard is the fact that it's an 'invisible disease' not always obvious to others. The highs, the lows, and the constant search for relief are extraordinarily frustrating. The MDA has chapters all over and many have wonderful MG support groups if he is willing to go. I personally do not, and rely on optimism and a supportive family (which your dad has in you). I'm also considering a talk therapist to help me cope with the frustrations - not my 'style' but I know it'll help. It may for your dad too.

Finally I want to let you know thar your support and coming on here for answers is admirable. It's not easy on family members either and at your young age I have a lot of respect for you!

Hope I was able to help a little. Hang in there - sometimes thymectomys take years to show results so remission is still possible. Also thank goodness it's MG and not ALS (they are closely related and I feel I am actually lucky comparatively).

Best regards,
Emmay