So I just had my first meeting with the social security office, and they have no clue what MG is! the question when did you become unable to work is the first one and my answer is in a completely grey area because most days I can't work but where i work is so flexable I can pretty much work whenever I am up to it, which is usually 10-20 hours or so a week.... but yea the lady i was working with was just like "auto-immune disorders are from birth right?".... I think its gonna take a hearing to get approved

Try not to be too discouraged. I agree it is very frustrating when trying to explain MG to anyone, especially those who you are looking to for assistance at the Social Security office. You sound a lot like me. I had an employer that accomodated me as much as possible by reducing my work hours and even allowing me to work from home. I still wasn't able to sustain employment due to my documented severe symptoms of Myasthenia Gravis. This is what my attorney wrote in a letter to the judge over my Hearing. He also stated that I had to miss work for several days a month due to my IVIG infusions, and the side effects from them. I was unable to tolerate ONE 8 hour work day per MONTH. Those reasons alone were pretty clear that I wasn't able to function well enough to keep a job. He didn't mention all the days that I was either late for work or had to leave early due to the extreme weakness and fatigue.

It sometimes feels as if you are speaking a foreign language when trying to explain MG to those who don't have it!

I applied for SSDI last October and found out today from Allsup (the company that is representing me for the benefits) that I was approved. This was after two denials. We filed for a Hearing, but Allsup requested a decision on the record. A judge read the file and the benefits were awarded.

I worked as a Workers Compensation defense lawyer for 20 years and I thought this process wouldn't be stressful for me. Boy was I wrong about that. What a relief.

Glad the system finally came through for you. It occurs to me that you may be the perfect person to write about your experience - especially since you have vantage points from both sides! Bet it would be an enlightening read!!

yes, when it comes to us, it is very different.
Taking care of patients is not like being ill yourself, and defending your cause is very different then doing so for another person.
In fact in some ways it is even more stressful, because you feel like you are in the wrong role. This adds confusion to an already confusing situation.

I know what you mean. It must be especially hard for you to be a physician with MG. Even though I had a pretty good idea that SSDI would eventually be approved, it was hard going through the process. I was used to being in control.

I believe the medical record spoke for itself. The QME didn't have a clue about MG and it is her job to find a way out of the claim. Once the Judge read the file, the decision was made.

jacob, when I had the hearing, I left with a feeling, wow, the judge had no clue what MG is, since he seemed puzzled by my responses and asked the same questions over and over again, just worded differently.
It was a short while later I realized he was probably just testing me to see if my answers would vary.(I dont know if this was the case, but I figured its his job to make sure who is disabled and who isnt)
I dont think the people down at SS are anything more than paper filing clerks, not bad people, just not really into all the disabilities and are just filing the claims.
Its a slow process usually, so stay patient.