By Roni on Sunday, January 26, 2003 - 07:24 am:

Can anyone recommend a doctor in the New York area that is knowledgeable about HMS? I saw one doctor who diagnosed the condition, but instead of taking it seriously and following it up, he actually asked me to show a student following him around "my party trick" by which he meant pulling my thumb down along my wrist. He also said how I should have been a dancer or gymnast and didn't address the pain I have. Any recommendations would be appreciated.

By roni on Sunday, January 26, 2003 - 07:26 am:

you can also email to ronm@nycmail.com

By Anne on Monday, January 27, 2003 - 07:02 am:

I saw one in Rochester who diagnosed me, and then proceeded to tell me that it really is not that painfull and has many advantages for musicians and gymnasts. Well, I had to give up both of my instruments due to pain, and I'd like to see him live with it for a while and then tell there isn't much pain. I have yet to find a doctor who doesn't pretend to know more about it than they really due. Let me know if you have any succes.

anne@matysek.org

By Lee Rosen on Monday, January 27, 2003 - 08:04 pm:

Hi all...
I am also interested in knowing if there is anyone in the NY city/LI area who is truly specialized in hypermobility and pain. My neurologist mentioned that there may be a clinic either at Colombia or at the NY Hosp. for Special surgery...but I need to do the legwork to find out. I believe the lead researcher in EDS is at Johns Hopkins... There is a wonderful and caring physiatrist who "appreciates" the hypermobility syndrome and the pain that goes with it -- though she is more able to treat the myofacial pain itself, and not specifically an expert in hypermobiltiy. Her name is Dr. Roberta Shapiro 212-888-4635. It may be a starting point.

By Ian on Tuesday, January 28, 2003 - 12:32 am:

It never ceases to amaze me at the attitude of "Doctors" to the problems of folk with Hyper Mobility Syndrome. All you can do is attend and ensure that you take all information on the subject when you go to them and convince them that HMS is a problem. Yes; party tricks done by a hyper mobile look great and demonstrations of flexibility can be as good as a professional contortionist but if they do not understand that some folks have extreme pain with this joint hypermobility then they are not much of a "professional doctor."

Do not give up and tell them some truths they clearly do not understand.

By roni on Wednesday, January 29, 2003 - 10:06 am:

Thanks for your responses. I hope that we can all soon find understanding doctors.

By Roni on Wednesday, February 26, 2003 - 07:43 pm:

Dr. Shapiro is $700 for a consultation -- way more than I have. Any other suggestions?

By wendy Bitter on Monday, May 05, 2003 - 11:48 am:

Hello,

I need to find a doctor in the greater Phoenix area that is familiar with EDS. My daughter and I both have it, and I now am having vascular problems. I need to be tested for EDS IV. My doctor has no knowolage of this. We really need help!! Please email me , ANYONE with information.
Thankyou

By Vicki on Wednesday, August 06, 2003 - 06:07 pm:

I am in the process of trying to find someone in the Phoenix area too. If I have any luck I will post it here.

By Christie on Sunday, December 07, 2003 - 04:36 am:

IT seems that finding a doctor that is knowledgeable and appreciative of hypermobility is difficult. I am in search of a physician in the St. Louis, Missouri area and I have not been able to identify what KIND of doctor I should be looking for. I have had an internist and rheumatologist both tell me that I have this condition, but all they want to do is throw a bunch of pills my way to make me go away. I had a much more receptive orthopedist, but he was concerned that he was working outside his expertise. Any suggestions on finding the APPROPRIATE physician, especially in the St. Louis area, would be greatly appreciated.

By Happy on Sunday, December 07, 2003 - 01:20 pm:

I wouldn't say hypermobility is outside the area of expertise of an (or: any) orthopedist. It's just that HMS is mostly known better by rheumatologists. My guess is it could just as well have been the orthopedists. But the rheumatologists in a way found out first, and as a result there has been more research in their area.

An orthopedist should know something about hypermobility, in my opinion. And maybe -if you find a good one- they are more helpful then a rheumatologist. Throwing pills is what rheumatologists do. An orthopedist should -at least in theory- think more in terms of problem-solving. Just a guess. Instability of joints for one thing is something they encounter more than rheumatologists. What they do not know is that their way of treatment is likely not going to work in hypermobiles. But that's just a lack of knowledge. Something you can't always blame them for. And there is another point. Unfortunately, most ortho's are more like engineers than anything like a doctor. At least the ones I know. But if you found a good one, I'd say...

By Heidi on Tuesday, December 21, 2004 - 09:55 am:

Does anyone know of a clinic or doctor who is knowledgeable about hypermolbility syndrome in Sourthern California? God help us if there are none in the US!!! There is an incredible clinic in Essex, England, by the way!!
Heidi