By Pam on Monday, June 05, 2000 - 05:10 pm:

Posted by Pam on April 20, 2000 at 06:53:34:

Question #1: My daughter has "dents" up and down her spine that are
very painful to touch. Does anyone else have that?

Question #2: How can I find out if there is an EDS/HMS specialist
anywhere in Oklahoma USA. Stephanie's doctor is wonderful, but he
isn't a specialist. I'm limited to Oklahoma, as I'm a teacher with
state insurance that's worthless outside of Oklahoma.

Finally, a comment to go with my questions: I've learned so much over
the past few weeks by reading the postings and the e-mails on the list.
Thanks to all of you for sharing!

By Eric on Monday, June 05, 2000 - 05:12 pm:

I have dents in my shoulder from dislocating it so many times

By Sue C. on Monday, June 05, 2000 - 05:13 pm:

Contact Nancy thru the website: ednf.org

She can supply you with the names & phone numbers of other EDS people in your general area (for $25 membership fee/ annual subscription). Call them for suggestions/ advice. At this time there is no central listing for EDS doctors.

I also called many specialists in my area (ortho surgeons) asking if they had EDS experience. Many turned me away. I saw a few who were quacks. Eventually I found a good one VIA talking to a physical therapist, then calling his office to confirm his experience. I'm now under both of their care -- and that truly is the word: CARE! If the medical people don't care about EDS, move on! (My PT didn't know about EDS, but she read ALL of literature I gave her AND she modified ALL of the standard exercises so I could do them correctly and not injur other joints.) They are both taking many precautions so I don't develop complications from surgery to realign my knee cap 3 weeks ago -- that's why I chose them.

Good luck! And don't give up... it may take a while and some traveling, but IT'S WORTH IT!

By Janie on Monday, June 05, 2000 - 05:14 pm:

Yes! I have the same thing and no doctor can explain it to me. I've had x-rays that showed osteoarthritis but the MRI showed nothing. I'm sorry I can't help you, but at least you know you're not alone.
Best wishes.

By Pam on Monday, June 05, 2000 - 05:15 pm:

Thanks Sue, good advice.

By Barbara on Monday, January 15, 2001 - 09:52 am:

Sue,

Nancy Rogowski, founder of the Ehlers Danlos National Foundation (EDNF), passed away. The new contact person for EDNF is Linda Neuman-Potash at LooseJoint@aol.com. The EDNF no longer maintains a doctor referral list because of the legal liability issue. However, they will try to put you in touch with people in your local area who can possible advise you on local physicians.

There are also online support groups with people from all over the world who can provide advice. A complete list is available at http://www.uggen.net/edstoday/support.htm