About Me: Female, 34, Columbus, OH, member since Sep 2008
I've been disabled since 2006 with the primary diagnoses of generalized dysautonomia and narcolepsy with cataplexy; I very much miss my career working with autistic children.
In the meantime, I'm busy making falling look glamorous, starting new fashion trends (oh yes, I ROCK my falls helmet), and going semi-pro in both visiting the doctor and picking up "the big bag" at the pharmacy.
Just a quick note to say hi! Heilferly i wanted to let you know how informative you have been for me. Just this week a neurologist put dysautonomia in the dx box on our daughter and it seems to match so very much. I am an RN as her mother and have been more than frustrated in the struggle of dx. She is 21 having seizures, blackouts, nausea, pain, activity intollerance, etc. Have you seen or heard of any docs in the colorado area working on this? We were dx at a teaching hosp. but so far wants to try prednisone on her,
trial did help particularly with the fog. and just felt better. checking also for lupus. Will update cardiologist and ask for tilt table test.
Smiles and keep up the advisement, you made a diffrence for us.
Best to you
Hey.. I read that you were on SSD. I was wondering if you could share your story with me. What are you diagnosed with? I am only 26, but feel SSD may be my only option.. So anything you would like to share would be sooo very helpful. xoxo
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