US Veteran with possible EDS

[cclairew]

I am a US Veteran dealing with VA system healthcare. I’m looking for a diagnosis and I don’t know where to start. I have been in a continuous circle of doctor to doctor. Please help.
I am 32 years old and I was at an appointment with my VA appointed social worker who suggested I read about Ehlers-Danlos. Everything I read basically described my life. I’m in constant pain and doctors just ignore my symptoms because I look fine on the outside. I grew up in Alaska with strange symptoms that stumped doctors, which I know now to be raynaud’s syndrome. If I do have EDS it would explain all the different problems I have experienced over the years.
I need to know where to start. All I have is a huge list to ailments that have gone undiagnosed for far to long. I want what everyone else wants… a diagnosis to better care for myself and my life.

[Dr. Diana]

Welcome to the forum! I think I can speak for everyone here that we are so sorry to hear you are suffering. I think you may have better luck getting help from the folks here if you could tell us more about your condition. Specific questions are easier to address than vague, global questions, too. Because my research is in EDS/POTS, I’m curious to learn if you have POTS?

[Barbara]

Dr Diana’s also produced a video on this website talking about the ‘Symptoms Checklist’, watch it at:-

http://prettyill.com/videos/watch/a_checklist_for_your_symptoms

To quote Dr Diana, about the checklist, she says – “This will help us with disability claims, dealing with schools, and getting out to physicians the extent of illness we can suffer. You can find it here:
http://prettyill.com/resources/articles
This is under the “Articles and Publications” section.”

Also there are stacks of useful Dr Diana videos at
http://prettyill.com/videos

In particular, Dr Diana talks of her own symptoms in the following 2 videos:-
http://prettyill.com/videos/watch/DrDiana_and_her_symptoms_Ehlers-Danlos_POTS_dysautonomia_hydrocephalus

http://prettyill.com/videos/watch/my_symptoms_part_2

I think you’ll find many things you’ll be saying ‘yes, me too!’ to.
Barbara
(UK)

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