I have a neighbor with RSD. She and I use to take walks. She is in her early 40's now but when I first met her I thought she had a stroke. She walks with a limp on her right side and her right arm is paralized from the RSD. It it her harder then the others I have seen around here with RSD. We had a group at one time and she seemed to be in the worst shape.

She had blocks for a long time to help with the pain but then they seemed to quit helping her.

Your daughter is young enough that hopefully if you can get her some good medical care then she might be able to get better.

I was just asking the about the Mayo Clinic for a friend that is looking for some help with her RSD. Have you checked into them?

I am sorry that your daughter is so young and going through this. No one should have to go through what we are seeing each other go through with the RSD.

Welcome to the group.

Ada

I have RSD in my Right foot and ankle and leg and lower back and moving into the other leg...

My foot is deformed due to the RSD attaacking it.. Its crooked, so that i can only walk on the outside part of my foot and the rest of it is up in the air. I havent been able to wiggle my toes or foot in 5 years.. its like my brain forgot they are there and I can not tell my self to wiggle them.. even therapy didnt help. I have the feeling that i have lost the sensation of my toes, but untill someone or something hits it, i know they are there!! So maybe thats what she is feeling... when nothing is touching it or anything like that, it feels like they are numb , but when you touch it , its well known.. but thats just me and my RSD...

Your daughter prob needs to start seeing a Pain Management Doctor.!! Neurologists are limited and a PM is more into treating RSDers


Take care and tell your daughter shes not alone!!


~Angel

Dear Kellie -

I would seriously urge you to check out the practice group set up by Robert Schwartzman, M.D. in Philadelphia, whom I flew out from California to see 3 years ago. Although Dr. Schwartzman is now seeling a lighter patient load, and has consequently a 3 year waiting list, thare are other very, very good RSD doctors within his practice group. I know that Roz on our board saw Jahangir Maleki, M.D., and thought the world of him. Their contact information is as follows:

Robert J. Schwartzman, M.D.
Jahangir Maleki, M.D.
Department of Neurology,
Drexel University College of Medicine
Drexel Neurological Associates
219 No. Broad Street, 7th Floor
Philadelphia PA 19107-1519
215-762-7090
215-762-3161 (fax) [Attn. Carol for new appointments]

Best of luck in your search.

Mike

p.s. While I've been treated regularly at the Mayo Clinic in Rochester MN since I was an infant, and continuing through a cardiac work-up this last summer, I have only had - at best - mixed results in working with there RSD and pain specialists and know a number of people who have had the same experience. Part of the problem there is that their Department of Neurology has for many years been under the influence of a now semi-retired specialist in peripheral neurology, who, having done some great work in his time, is a MAJOR hawk against the use of opioids in patients with chronic pian conditions. Secondly, they are really reluctant to get into the treatment of RSD patients who live outside of their immediate area, where they believe, and perhaps rightly so, that RSD treatment is often a hit or miss situation, on account of which multiple appointments over time may be required before they get things right. I know that I was not a candidate for either in-patient ketamine infusions or thalidomide treatments, only because I didn't live nearby, on account of which it would be hard for me to be seen in follow-up appointments. Hope this is helpful.

Thank You, daylilyfan, dreambeliever128, RSD Angel, and fmichael,

We really appreciate all your help and support.. And it is encouraging to us to have you'll to share our RSD problems with, and to be able to read yours as well....

Yes, My daughter is so young, and we are hoping that someone will show some interest in helping her.. She has had 2 nerve blocks in the past, one which helped and the other did not.. But, they have her on 3 diffferent meds a day, and she is seeing a pain psychologist ( which is a great lady) who is very understanding and is very helpful to my daughter , Kirsten..

But, she just keeps getting more problems as time goes..

THANK YOU ALL AGAIN,
TAKE CARE,
Kellie and Kirsten

Hi Their,

Here is a link to Maleki MD, maybe you could at least email him.

http://www.drexelmed.edu/Departments...2/Default.aspx

Hi Kelli & Kristen

My heart goes out to you both. I can't imagine seeing my boys suffer with such pain and limitations or to experience it myself. My husband has had RSD in his left leg for 1 1/2 years. The pain is manageable for him. The limitations are harder.

I am writing because we saw Dr. Maleki for the first time about 2 weeks ago. He is very kind and knowledgable. He alots an hour for a new patient consultation but will take longer if necessary without making you feel rushed. We did not have to wait long for the appointment. He's no longer working with Dr. Schwartzman. Here is where his office is located:

Dr. Maleki
100 N. Presidential Boulevard
Bala Cynwyd, PA
1-610-949-7250

I have to say that while he was thorough, kind and knowledgeable, George had a severe delayed reaction to the exam. Common, so I hear, from other RSD patients after a manipulative exam. You may want to limit as much as possible the manipulations.

There are websites for teens. Perhaps you've already found them. I hope so. Here is one http://www.angelfire.com/amiga/rsdhopekids/rsd_is.htm

Best wishes,
Teresa

or SKIPS

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