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Has anybody been able to get genetic testing done through the V.A.? I have been beating my head against the V.A. wall of health-care for the last twelve years trying to get answers for my mysterious illness. I was able to get them to give me a diagnosis of Fibromyalgia and CFS ten years ago. That turned out to be the kiss of death though because then all of my symptoms fit within that realm so when I would request more testing they could tell me things like, (my favorite) “it’s all in your head, quit feeling sorry for yourself and go home and start doing some Ti Chi and you’ll feel fine” I am sure everyone here can identify with me on that problem though! I would not accept that diagnosis and with dogged persistence finally was given a diagnosis of dysautonomia by a pain specialist while getting TP injections before my neck surgery. BTW, TP injections failed and had to get a blood patch done and a year later still suffering from a headache that won’t subside! Up to my dysautonomia diagnosis I had no idea that I was having blood pressure problems, but did know that I got dizzy and nearly fell on my face every time I stood up. I complained about this each time I saw my doctor so am surprised there was never any consideration given to this problem. I went to Wally World and got a blood pressure machine, found out I had POTS and orthostatic hypo-tension and convinced my Doc to give me a tilt table test. It was the longest forty-one minutes of my life before I passed out but it finally got thier attention. While searching dysautonomia I came across this really cool website called prettyill.com where I learned about EDS. I realized I was one of those freaks of nature that could put my ankles behind my head and bend my thumbs back to my elbows. I scored a 7 on the Beighton scale. Armed with this was allowed to consult with a rheumatologist who gave me a diagnosis of benign hypermobility but told me The V.A. would not pay for genetic testing. Now, I’m sure I have EDS type III and I have five of my six kids that are hypermobile and have POTS symtoms so I feel its critical that I get my exact disgnoses pinned down so that when I talk to my kids doctors in the future about thier EDS I don’t continue to get that bemused stare like I’m some kind of crackpot! I’m wondering if anyone else has encountered this problem or if there’s some way to get testing through other avenues. I can’t afford to pay for testing myself and with six kids and only disability income my optons are limited. I have medicare but I live in Alaska and can’t even find a doctor that will give me an appointment. Any help would be truly appreciated, thanks!
I wish I had an answer for you, my friend, but I’m not familiar with the VA’s system. I DID want to give you a (((hug))), though, and tell you that until they can run a genetic test and find a defect in collagen (which may never happen — this condition may not be what people have thought it was, actually), “Joint Hypermobility Syndrome” may be as close as you can get. We *really* need for them to drop the word “Benign”, though. Jeesh. “Benign” means “not life-threatening”. Frankly, I beg to differ. Until someone does a longitudinal study to see if our lives are shortened by the effects of this disorder, they are guessing, and in my book, that means the term should not be used. If/when longitudinal studies are done, I think many eyes will be opened as to what the HECK many of us are forced to deal with as time goes by. I believe there is a push to get “Joint Hypermobility Syndrome” added as potentially disabling… These sorts of changes can take a while, though, dog-gone-it! Hang in and GO GET ‘EM! 🙂
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