By deb the friendly lurker on Thursday, November 18, 2004 - 09:11 am:

I'm so tired of this. I'm hypermobile. That much has been established. But where do I go from here?

I bounce from a primary care doctor to a physiatrist to a rheumatologist to whoever will see me and no one knows much about hypermobility.

I need to know whether I have EDS. I need to know what to expect for my future: whether I will have high-risk pregnancies or whether I should be concerned about my heart murmur (MVP) getting worse. I need to see someone who knows about all of this and can test me, and I'm willing to spend money and fly across the country from Boston.

The UK is far ahead of the US in hypermobility-related-illness diagnosis and treatment. But someone in the US must know what's going on. I'm beginning to write to doctors whose articles I find on PubMed or MedLine, asking for referrals.

Does anyone have any other advice?

Thanks.

PS: I need to upgrade my browser and system, but for now, the other hypermobility board just will not load for me. I think it's primarily UK people, anyway. If there's a reason why I should definitely be on that board, please let me know and I'll make it happen.

By Michelle Castle on Friday, November 19, 2004 - 09:10 pm:

Deb,
A lady on the EDNF message boards recently asked about doctors in Boston. One said the Children's Hospital genetic's department sees adults with genetic disorders, as part of treating "children not yet conceived". Here's the website address: http://web1.tch.harvard.edu/cfapps/CHdeptDisplay.cfm?Dept=Genetics

Another option for diagnosis or a refferal is a doctor in CT who is on the EDNF medical advisory board.
Petros Tsipouras, M.D.
University of CT Health Center
School of Medicine, Division of Genetics
Farmington, CT 06030
(860) 679-4691 - Phone
(860) 679-1355 - fax

The hypermobility.org message boards are more active than this site. Same thing with the EDNF.org message boards. Also, there's an EDNF member working to start a support group in Boston. I can pass your contact info on if you want. Even if you "only" have HMS, you're welcome to be apart of the EDNF and the local group. They let me tag along.

Michelle

By Az on Saturday, November 20, 2004 - 07:44 am:

{I need to upgrade my browser and system, but for now, the other hypermobility board just will not load for me. I think it's primarily UK people, anyway. If there's a reason why I should definitely be on that board, please let me know and I'll make it happen.}

I'll admit a lot of us are from the UK and i guess thats because the two diagnosing rheumatologists are from here. The only reason I can see you having a problem there is finding which specialists to see as we at the HMSA dont have the contact details as yet to pass on. Otherwise anyother info on your condition that you want to know about or any question you need to ask we try our best to answer.
The forum is also moderated (Almost) everyday and if one of us is not there and something is posted that upsets the other members someone will always contact a moderator (We are available to contact via PM or e.mail) and it gets removed ASAP and not left for weeks for all to see.

By Michelle Castle on Saturday, November 20, 2004 - 12:33 pm:

"The forum is also moderated (Almost) everyday and if one of us is not there and something is posted that upsets the other members someone will always contact a moderator (We are available to contact via PM or e.mail) and it gets removed ASAP and not left for weeks for all to see."

I wonder what you might be reffering to, Az.
Michelle

By Az on Sunday, November 21, 2004 - 05:49 am:

Oh dont know Chelle ;)
Think its a disgrace that anyone would spam a support group with porn >:-( but it wouldnt stay on our site