Hi Desert Flower,

Like everyone else, I'm so sorry for the treatment you received from that doctor. But I'm also confused (which isn't unusual for me these days) as to why you didn't use your original neurologist for the SSDI evaluation. It sounds like that doctor did all the testing needed to get the MG diagnosis.

I've posted my experience before on this site but I started my SSDI request about 6 months after my diagnosis using a lawyer who has experience in this field. Once I started my application online and received a call from the government verifying the details, they established a claim number and I gave that information to my lawyer. The SSDI office sent me a package of paperwork (several inches think) to fill out and told me that they would send paperwork directly to my neurologist for him to complete.

My lawyer immediately notified the SSDI office by letter telling them that he represented me and he also sent me a form for my neurologist to complete and the lawyer sent that to SSDI with a letter saying that it was obvious that I fit the required medical conditions while we made sure the doctor completed the SSDI paperwork promptly. My lawyer also let them know that we would appeal if my request was denied. I was approved at exactly 90 days from my initial request.

It is the law that the lawyer cannot receive any compensation unless your application is approved and then they can only collect I believe 20% of the total initial payment from SSDI. I've been told that a diagnosis of MG is one of the diseases that is automatically approved by SSDI. Don't know for sure but their website list the approved diseases.

I believe that the lawyer's assistance helped with my approval plus it took alot of the mental hassel from my husband and me as we had been through so much at the onset of this horrible disease (I also have SPS). Some may think that the cost isn't worth it, but I believe that anything that helps relieve the stress that we live with every day is worth it.

Hope this helps - sorry it's a long response. Dealing with the government is not an easy thing, but try to be strong and don't give up..

Southern Bell