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Autonomic Nervous system vs dysautonomia

Neuropathy | Last Active: Jun 1, 2022 | Replies (45)

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@boltz7555

@dbeshears1 Hi Debbie - I’m sorry to hear you’re also experiencing trouble getting quality care that you deserve. Seems like so little is known about neuropathy or how to treat it. Can you share more about your process to go on disability? Was it accepted the first time applying or did you have to appeal? Did you use an attorney?Did you file based on neuropathy alone or other conditions? Thanks for any insight you’re willing to provide.

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Replies to "@dbeshears1 Hi Debbie - I’m sorry to hear you’re also experiencing trouble getting quality care that..."

So many people told me that “everyone” gets rejected for Disability, so get an attorney up front. So I consulted a very nice specialized attorney who said “My dear, it’s really not that difficult of a process when you’re disabled, please go through the SS Disability application process, then if you get rejected, you should contact us. We shouldn’t get paid a cut of what you’re entitled to!”
I was surprised at his tone vs “everyone else’s” advice, so I applied. Yes it seemed like a lot of work. You could either have copies and fax/mail a lot of records, or just give them a name of all doctors and hospitals etc, and submit SSA a release form so they could collect the records on your behalf. Since my mobility was limited, and the paperwork to fax would have been enormous, I let them do the work.
I think you have to wait 18 months of being disabled before it kicks in, but I didn’t apply until 2 yrs after disability start. I guess I had hoped I’d get better. I was scheduled a phone call with the SS Disability agent, and he asked basic physical performance questions, and 2 weeks later I was approved. The whole process took 5 weeks most? And, since I applied late, they sent a lump sum payment for the 6 months I missed by not applying earlier.
So, I thought it was a reasonable, fair process to be honest. I will be subject to occasional followup for continuation, I think within 5-7 years, so any time now. I’m not happy to not being able to work and have the wages I was accustomed to after working 30 years, but this helps pay the bills. At some point they required me to start getting Medicare (and paying for it of course). At first I wasn’t happy for extra expense since I had other insurance, but that too had actually been a benefit given the medical expenses we have with this illness.
I hope that helps. I truly think the Disability system is designed to work for us in need, though I agree the initial paperwork can be cumbersome.