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For Those Of You On Disability


cardiactec

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it took me five long years to get disability because i was turned down three times and was headed before the judge but i wrote my senator about my condition and the next week i heard back from him that he talk to social security and made them realize that i needed disability and since then i have been receiving my monthly checks. :P

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I got it on my first try, but I don't believe they used POTS per se. As far as I know POTS is not accepted yet by ssdi. Arrythmias causing syncope or some other way to word it (semantics) works much better.

I googled it and found it right here on this site, so you might archive it. It just came up on google and I have no idea how to paste it for you. sorry, I can barely get this thing turned on any more. morgan

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POTS is accepted by SSDI----depending on the medical documentation by your physicians.

ICD-9 CODE for POTS:

785.0 Tachycardia, unspecified [postural orthostatic tachycardia syndrome]

My SSDI approval was more based on my EDS, as the medical documentation was vague on the POTs before the year 2005. However, I had full support on my disability case from my ANS doctor, and I think his functional capacity report helped.

You want to make sure that all documentation actually makes it into the hands of SSDI, and follow up with the case worker to make sure of it. Get confirmations of anything faxed, and witnesses to every phone call. Also, make sure your physicians fully support your case, and fully validate your illness. They need to understand your limitations, and be willing to document them. Our physicians are extremely busy, so it's up to us to followup with them to see if any paper work that needs to go to SSDI is filled out.

Just because you list your physicians that take care of you on the SSDI forms, does not mean they are getting the paper work to fill out from SSDI. Following up is very important. The Case worker can help you with this. Just ask if any paper work was received from the doctors you listed on the SSDI forms. I took the functional capacity forms with me to my office visits to insure they were filled out.

It took me three years, and I had to fight hard for it. I involved the senator and congresswoman, as the physician hired by SSDI to give me an exam lied consistantly throughout his report, and had NO knowledge whatsoever on POTS. At the time of his exam I was not officially diagnosed with EDS yet, and I'm sure he wouldn't have a clue on that either. He was completely dismissive of my spine instability also. In the end I had a lot of support from my EDS geneticist. At my hearing the medical expert selected for the hearing is supposed to be neutral.

HE was, and he is actually the one who helped the judge decide on a fully favorable decision. The psychologist appointed for my hearing tried to bring up the Somatization Disorder, as this was what the psychologist appointed by SSDI reported after my examination. THIS, was thrown out and not used at the hearing, and when the psychologist tried to speak at my hearing, the judge informed her that we were adjourned, and she tried again, and he said "we are ADJOURNED!". Ahhhhh, so nice to see justice in action. :P

The ME obviously did his homework on EDS, and I was quite shocked when he said my prognosis was poor. Sometimes we spend years trying to convince people how sick we are, but were in denial on how sick we really are. It's sobering to have it spelled out to you by someone who you thought would dismiss it due to lack of knowledge. Surprisingly it was one particular report that one on my doctors wrote that summarized my conditions in four pages.

Maxine :0)

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Hi,

It took me 3 years.

I think it helped to have a lawyer take care of things.

SS makes you see a psychologist/psychiatrist of their choosing. That was not helpful. She did a lot of memory testing.

I think what helped me the most was I had seen the same physician for 15 years. He and my neurologist both wrote letters to the judge.

They were both very specific about my symptoms.

I did not have to go to hearing.

Good luck,

Dawn

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