Eds Experts... Want To Make An Appointment.

[erickamcc0523]

So, after my failed and somewhat wasted appointment at the geneticist this past Thursday, I have decided that I need to see someone who is actually quite familiar with Ehlers-danlos syndrome, and not someone who had to print off the symptoms to attempt a diagnosis (and then accuse me of having psychosomatic symptoms.... ...but that's neither here nor there). My gut is screaming loudly that I have EDS, the same dynamic it screamed that I have POTS when I first read the symptoms. Speaking of reading about the symptoms, the geneticist told me to not research EDS again as it would "confuse" me.. Anyways, I was wondering if anyone knew some an EDS expert, perferably in TN, but anywhere in the surrounding states (Kentucky, North Carolina, Georgia, or Virginia) would be alright. Actually, I am willing to travel as far as I need to, but as you all well know with POTS and other maladies I'm experiencing, traveling that far is VERY difficult.

Again, I wish I didn't have so much brain fog at the time, because I would have told her to stay out of psychology and stick to research (probably not as nicely, though). The more I think about the appointment and what she told me, the more angry I get. I suppose part of it is being so sensitive to being called psychosomatic, since that's the same thing I was told the 5 or so years I was suffering with the nausea and stomach pain (and ended up in the hospital a few times on a morphine and phenergan IV) of gallbladder attacks. Oh well.. I must put that appointment behind me and focus the little energy I have on actually getting diagnosed.

[mkoven]

I really recommend Claire Francomano in Baltimore. I can't say enough good things.

[Maxine]

Another good Doctor is Dr. Brad Tinkle Md PhD from Cincinnati Children's Hospital----he's a geneticist who specializes in EDS and other connective tissue disorders. I know Dr. Francomano is great too-----as Mkoven said. She's also a geneticist. I was in baltimore, but didn't see Dr. Frankomano. I saw Dr. Nazli McDonnell who is also a geneticist----she's running the EDS connective tissue study at NIH. I was involved in the study in April 2008.

Here's link's for all of them;

http://www.gbmc.org/body.cfm?id=67

http://www.grc.nia.nih.gov/branches/lci/nmcdonnell.htm

http://www.cincinnatichildrens.org/svc/fin...brad-tinkle.htm

I hope this helps! Dr. Tinkle is my regular EDS geneticist that I see yearly. Dr. Wenstrup was the first geneticist to diagnose the EDS, and he has been replaced by Dr. Tinkle. Dr. Wenstrup has moved to Colorado, and I think is more involved in research. I think that's what I heard---don't quote me on that----- . Don't lose hope----a famous doc that we all know didn't think I had EDS, and even though he's one of the best POTs doctors who has knowledge of EDS, I knew he/she was wrong. I had subluxated my right scapula, and had a lot of instability in my neck in addition to hypermobility in many large joints, and some small joints. This doctor has since been further educated, and I have his full support on the EDS diagnosis.

It's a good thing I went with my gut feeling on the EDS, as the EDS has been the cause of all my problems, and even my PCP recognizes the seriousness of EDS, and how destructive it can be. EDS can be very serious.

Maxine :0)

[Crow]

I was diagnosed at the genetics dept at Vanderbilt in Nashville. Dr. Thomas Morgan, who is a really good Dr.