Hi Jim,

Sorry to hear about Kathy.  

Moyamoya falls under stroke as it relates to SSD.  TIA's are mini strokes.  There is an organization working with SSD to assist moyamoya folks with getting SSD.

I'll do some research to confirm which organization (either NINDS or The American Heart and Stroke Assoc) and I will reply via your e-mail address.

Also, is Kathy currently on a disability from work?  If so, that makes it somewhat easier because the disability criteria has already been established meaning you don't have to reinvent the wheel so to speak.

I'll be in touch soon.

Lore

Hi Jim,
I applied almost two years ago and was turned down, I hired an attorney and I have just now recieved a hearing date, December 3rd.  I provided all the necessary paperwork originally but I think I was turned down because they don't know what Moya Moya is?? Anyway I will let you know how things turn out for me because I experience the same symptoms as your wife plus when I get tired my vision is effected from my stroke.  I just wanted to prepare you for the length of wait there is, maybe it is different in each state?  I live in Missouri.  Good Luck!!

There is a whole thread with some really helpful information about getting SSD in Moyamoya Related Topics under Patient Resources.

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Hi Jim,
I guess I am one of the lucky ones, it took me 9 months and a lot of different doctors visits to get approved...I had to explain MM to most of the doctors they sent me to...I did have a hemmorage that left me in bad shape, so that might have been a factor...I am going to be reevaluated for disability in July of 2008, but I still have the headaches, fatigue and memory problems 6 months after surgery, so I dont think staying on will be a problem...
Getting a lawyer is probably your best move, they know all the legal "lingo" and dont take no for an answer  :D

Good Luck!

Tia

My husband was approved within 2 months. My understanding is that social security goes by your proof of medical records. I also think what helped is I actually set an appointment to have the interview with the actual social security office. The lady who interviewed my husband was very, very nice and she did the filling out of the paper work during Bob's interview. Maybe that will help if they can actually speak to you in person and see the actual condition you are in. I really think that is what helped my husband get approved so fast.

The surprising thing about it is even though Bob applied in May of this year he was not only approved by July but they actually determined he had been disabled since his brain surgeries 2 years ago and went back one year in payments. We received about $12,500 in back social security. They said that they can legally go back one year from your date of applying if it is proven you are disabled.

Hope this helps and as mentioned before I really think if you can actually go in for the interview it will help.

I got denied, but I think being a student doesn't help because I have some other income.  However, during off times I still don't know how to come up with income.  I don't like taking out the extra loans.  The weather is killing me now and I can't possibly work.