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What type of doctor should I see for DX?
Hi. New to the forum. Have had physiatrist and P.T. tell me for years that I have hypermobile joints (I've known my entire life). At 49 have been having spine probs (things always moving out of place, esp. S.I., pelvis, sacrum) and dysautonomia just confirmed by tests at Mayo. I want to have "official" EDS testing? What kind of doc do I see? Any suggestions for Florida doc?
Thanks.
Thanks.
Hi and welcome to our EDS group......wow u have quite a bit going on.
It seems we all have several dx's to deal with...u said u r going for testing for POTS or chiari...I have chiari and might be able to help u...we do have a chiari forum.....
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc
I do not have the vascular type EDS, but am interested in hearing more about the testing and what all was involved .....
"selma"
I don't know how far have you have proceeded to date...but you can contact Melanie Pepin. She is the Genetecist at UNIV OF WA in Seattle...Collagen Diagnostic Lab working with Dr Peter Byers. Dr. Byers performed my testing (blood and biopsy). My diagnosis of Vascular EDS came in 2007. I am still adjusting and trying to come to terms with it. It was a total shock although after 3 years of multiple life threatening dissections....I was glad to finally have answers. I also have fibromyalgia, costrochondritis, scoliosis, BPPV, depression gastroparesis, and a panic disorder. I am soon to be tested for possible POTS or Chiari. I am not looking forward to that. I take several meds. Most important for Vascular patients...is blood pressure meds and vitamin C. If anyone has any questions ......just ask. I did attend the EDNF conf in Maryland last year....did anyone else on this site attend?
see a geneticist, there are a whole slew of connective tissue disorders and some can have deadly consequences if misdiagnosed or just plain missed.
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Hi
Definately see a rheumatologist that specialises in EDS. The other option which is the one I saw first of all was to see a geneticist who can tell you whether you have EDS. There are many different types and if you have type 3(hypermobility type) they can not genetically test you as they not know what gene is involved so they can only check all your joints. I have type 3. My rheumatologist sent me for an echocardiogram as people with EDS can have Mitral Valve Prolapse. I do not but do have a mild leaky Mitral Valve. Good Luck with everything.
Irishgirl
Definately see a rheumatologist that specialises in EDS. The other option which is the one I saw first of all was to see a geneticist who can tell you whether you have EDS. There are many different types and if you have type 3(hypermobility type) they can not genetically test you as they not know what gene is involved so they can only check all your joints. I have type 3. My rheumatologist sent me for an echocardiogram as people with EDS can have Mitral Valve Prolapse. I do not but do have a mild leaky Mitral Valve. Good Luck with everything.
Irishgirl
Hi....u should be able to look up a rheumatoid dr that specializes in EDS...I know there is one in Baltimore, MD....mayb her office can suggest someone in ur area.
Look up a Dr Francamono in Baltimore and see if she is aware of others like her that deal primarily with EDS and Joint Hypermobility Syndrome.
"selma"
Look up a Dr Francamono in Baltimore and see if she is aware of others like her that deal primarily with EDS and Joint Hypermobility Syndrome.
"selma"
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