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BarbParticipant
Documentation. Patience. Persistence. Expect to be denied…over and over and over. DON’T GIVE UP. DON’T GIVE UP. DON’T GIVE UP.
I don’t think they even read your paperwork/files the first two times you send it in (seriously!) I got a lawyer; I didn’t even attempt it by myself. And it still took me until the third appeal, when I actually had to appear before the judge in a courtroom. The lawyer could not believe the stack of medical records/documentation she had to review in my case. Hospital records/doctor visits. I kept a journal for over a year of every time I passed out, every doctor visit, what they said, what meds they changed, what my bp readings were when I felt bad….what I was doing when I passed out, what time of day it was, etc….etc….etc…
The judge asked me why I was “noncompliant” with a particular med, and I told him that I just kept forgetting to take it (it was midodrine and I have to take it ever 3 hours and sometimes forget the middle-of-the-day dose). Evidently doctor had noted that!
Keep track of the day your disability started. Mine was the last day I worked when I ended up in the hospital and was never allowed to go back to work until I could go two weeks without passing out – never happened, and then was never given permission to drive, and still can’t three years later. Your disability payments start I think it’s 6 months after that date. So whenever you FINALLY get approved, they will backpay you to that date.
The most important advice I can give you is keep records. Keep a journal. If your doctor says “don’t drive”, get it in writing. Get a big binder. Every time you go to the doctor or hospital, ask for a copy of those records, even if you have to pay for them. Keep it organized and up to date. Don’t leave it up to the lawyers to handle it – do it yourself. And keep a copy of everything for yourself. Always get a copy of all MRIs, X-rays, labwork, anything, doctor’s notes.
My journal is just a regular notebook with three headings: date/time/and then I put what I was doing and what happened/bp/etc….if I vomited/passed out/hit my head/got a concussion/went to e.r./was admitted….etc….
Sorry to write a novel – but I’ve been through it. It’s a pain in the butt!!!! They will do anything they can to avoid giving it to you. Seems the ones that don’t need it are the ones that end up getting it. Hope I’ve been helpful.
Barb
September 16, 2012 at 8:02 pm in reply to: Vid on diagnosing dysautonomia is up! Please check it out! #2932BarbParticipantI just wanted to take the time to say “thanks” for your web site. I’ve been diagnosed with neurocardiogenic syncope since 1998. It’s been bad since 2009 when I was hospitalized 5 or 6 times for 1-2 weeks at a time, and spent a good part of the year in bed. I’m doing better, but it’s still very much up and down. I’m still not allowed to drive, because I can’t go long enough without passing out to get a doctor’s permission! I came across your site doing some searching for “mast cell” because I just recently discovered the term “dysautonomia”, and discovered that NCS falls under that umbrella. I seem to keep hearing the term mast cell as well.
I’m totally fed up with “specialists” who know nothing (traveled from Florida to Cleveland Clinic in Ohio last summer and spent a couple thousand dollars for NOTHING); have determined I will never go to another doctor – will just have to live with this. :/
BUT in doing my own forum-searching the last few weeks, I’m learning a lot. For instance, your mast-cell descriptions possibly answer some questions for me. I have sent an email and your link to my primary care doc (who, thankfully, is an excellent, caring doctor – as well as a friend). I have had years-at-a-time of hives/angioedema, and just last year had an inconclusive bone-marrow biopsy due to elevated eoosinophils. If I understand part of your mast-cell info, this might be something worth looking into????
Anyway, IF I decide to try another doctor, I will certainly know more. I have heard Dr. Randall Thompson in Pensacola is a great Dysautonomia specialist. But, like you, he suffers from it as well, and has only a limited practice and has to cancel frequently due to being ill. :/ I may look into going to him….but would hate to schedule something and have to reschedule after traveling that distance! LOL
Best of luck to you…and thanks for the hope and help!
Barb
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