Betsy Ann,

Hello!! I am so sorry to hear about your daughter's RSD/ movement disorder. I have had RSD for about 1 1/2 years, and I have movement problems as well.

I would be so willing to talk with your daughter!... I am almost 17. Just PM me and I can give you my email address (or you can PM me with your/ her email address).

It is SO frustrating with doctors sometimes! As far as support groups, if you search with your state name and "RSD support group" in the search as well you can find some I am sure (that is what I did, but I found that there were better support groups online- like this one-).

I have heard it from doctors who think I have psychological problems causing RSD/ that I was predisposed to developing this... it's frustrating! And makes you feel horrid when you have a bunch of REAL problems to be told that it's psychological and you just need therapy!

If you don't mind my asking- what doctor are you working with now??

Dr. Sherry is really a cruel man- I could tell you stories of what he has done to children! His therapy works for some, but he believes that it's psychological as well...

Here is a thread that may be helpful to you:
http://neurotalk.psychcentral.com/sh...ad.php?t=19827

Praying you find answers!!

Dear Betsy,

Living in PA you have the option of seeng Dr.Schwartzman out of Drexel University in Phila. 215-762-6915. Carol is his secretary. It is extemely hard to get in. But if you explain your situation and the severity they may help you out. I hate to put it like this but be pushy but nice. These are caring people, if the can they will. He has 100's who want to see him but keep positive.

I have worked with Dr. Schwartzman myself and he is a very nice and most important knowledgable about RSD and yes did help me. At least that is my opinion. I did have success with his protocol.

I am so sorry to here about your daughter. This disease is bizarre. I also have RSD 3 1/2 years but diagnosed early and treated immedialty between NYC and PA.

Betsy,

All I can say is I will pray for you and your daughter and try and stay as stress free as possible.

I never post public so if you need more info please private message me.

Thank you,

Ann

The problem I've had is that they won't take you if you are under 18!! However, if you know a doctor from Drexel or Hahnemann, you can ask them to try to get you in (something I may end up doing because my rheumatologist can do that for me once he is like 100% sure of my diagnosis).

As far as I understood, he has seen patients under 18 (I have read a story of a girl who saw him), and so I called both Drexel and Hahnemann about it, but they said no...