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My name is Adriana, I am a 39 year old female, and I was diagnosed with EDS when I was very little but the doctor only told my mother that I was going to be a very flexible person and that was about it. My father and my sisters are very flexible also so having an even more flexible person in the house was not a big deal. I started growing up and was always clumpsy, with body aches, unnumerable illnesses without explaination but the doctors were not able to identify anything that was obvious with a regular exam. After several surgeries I developed an intensive chronic pain in my entire left side of my body and after about 17 years of constant pain I was diagnosed with Chiari I. I had the decompression surgery and it did help with a lot of my complains but the problems had been untreated for so long that my spine had been compromised and my pain never went away. Two years ago I started getting terrible vertigo 24/7 with episodes similars to the ones posted here and since then I have been trying to find an answer but no luck. The neurologist said I had ” Migraine Associated Vertigo ” and I started treating it with lifestyle changes, glutten free diet and medication that only makes me gain weight and get more depressed. It was not until I read the Driscoll Theory that I remembered I was diagnosed with EDS when I was little. No doctor ever put 2 + 2 together and I have seen different specialist. I have never been tested for some of the mast cell and other complications that have been posted and I am not sure what specialty of doctor should I start seeing. Does anyone have a clue if a reumatologist, genetics or orthopedic would be better? also I am in Charlotte, NC and I have called doctors and no body seem to know aboyt EDS. Thanks for any input…
Hi Jaraadri, boy, this is the hardest question to answer! Finding doctors! I went through frustration and agony trying to find someone who would even SEE me, much less TREAT me. I’d get that “deer in the headlights” look from them when I walked in the door. Anybody ever seen that? ha. Basically, if you can find a doctor who is open-minded and wants to help, that’s a good one. A geneticist is important, especially initially. I love Dr. Clair Francomano in Baltimore. So many of us have undiagnosed mast cell disease and THE doctors to see for that are Dr. Castells and Akin in Boston. After you get those doctors squared away, then you “go shopping” for someone to help you with the “fallout” as you need help. Local support groups can help you find good ones, and I know the folks here will help if they can. It is something we all deal with on a regular basis, Hon. At least you know you’re not alone in your quest! Big hug, 🙂
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