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521d
Finally getting taken seriously by my neurologist. After hearing from PT how very flexible I am and hypermobile bladder and discs and so many other symptoms of EDS they are sending me 2 a geneticist. was Told Mayo is the only 1 around in Orlando. Referred but they only take so many Medicaid patients per year, might have 2 try again in January. I'm hoping and praying something gives. Been in so much pain and getting worse. The bruises and GI issues and joint problems and bladder problems and lack of brain and energy are getting 2 me. Another broken toe, anyone get this? I barely stubbed it. A lifetime of pain so far since my 20s. Gotta b something going on. Any helpful suggestions on getting diagnosis and Drs 2c Wud b great. So far I have pain mngt/ neurologist, seen rheumo, waiting for Neurosurgeon for horrible back issues including stenosis, opthalmologist (eyes been kooky) . Waiting on dermatologist and now geneticist.
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Chronic Generalized pain
Bladder disorders
Ehlers-Danlos Syndrome (EDS)
Generalized pain
Spinal Stenosis
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448d
@TunaGoon ok, can u possibly give me a good one that I could do at home? A site possibly? There's so much out there. The only things my doctors have done is have me bending a couple ways and I could and more
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453d
Your primary can do the beighton scale with you and give you a diagnosis from that. It's best to follow up with the geneticist to check the types but you should be able to move on with getting treatment off that. You can do it at home if you just want to know you qualify. It is only specific to the hypermobile type so if you don't have a qualifying score don't rule out the rest.
Tulane lakeside has a Eds clinic in Metairie Louisiana right outside of New Orleans. It does have a waiting list but it is worth the wait. If you are interested I can get the information for you
455d
@Nonamae ya not gonna happen, I'm all the way in Florida. I just don't have funds like that and am on Medicaid.
☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision
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