• Skip to main content
  • Skip to secondary menu
  • Skip to primary sidebar
  • Skip to footer

PrettyIll

Header Right

Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

  • Home
  • The Driscoll Theory®
  • Videos
  • Meet Dr. Diana
  • Forum
  • Store

Reply To: Disability

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Disability › Reply To: Disability

September 19, 2012 at 8:52 pm #2937
Barb
Participant

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

Footer

PrettyIll.com

This website was created to inform, educate and brainstorm with fellow patients and doctors. The content should not be used as a substitute for professional medical advice, diagnosis or treatment. Readers are encouraged to confirm all information with other sources and their physicians. The creator of this site will not be liable for any direct, indirect, consequential, special, exemplary, or other damages arising from the use of this website.

Twitter: @prettyill

What others say

“Dr. Diana will always hold a very special place in my heart for her selfless devotion to helping everyone, not just the Ehlers-Danlos community. I hate to think what my life would be without her insight and guidance.”

-- Chris Gross

Listings by topic

  • Chronic Fatigue
  • Consult
  • Contact
  • Coping
  • Ehlers-Danlos
  • Fibromyalgia
  • Hydrocephalus
  • Mast Cell Disease
  • Multiple Sclerosis
  • Orthopedic Issues
  • Pain Control
  • POTS
  • Speaking Engagements
  • Store
  • Uncategorized
  • Vascular abnormalities

This work may not be reproduced, copied or used in anyway without the express permission of the author -- that's me © Dr. Diana Driscoll 2020