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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KellieS, I responded to your thread when you introduced yourself.

As far as the numbness, I have only had a small amount of that in my fingers/ toes at times when they were so cold (from the circulation problems of RSD), and it didn't last very long.

Hope your daughter is doing well!

Hi,
My heart goes out to your child. I got this at 3 an dit is hard when you are young. My question would be are you sure all her symtoms are RSD? Loss of feeling seem inconsistent with with a pain disorder. RSD is often a diagnosis of last resort. I would be sure to take her for at least 3 opinions with good neurologists. I would be thinking MS, and those issues if she has loss of feeling. How long has she had it??

First off, I want to Thank InHisHands, and mommyjen for their help and concern.


InHisHands, her feet stay extremely cold, she can wear 2 pairs of socks and they feel like they have been in the freezer.. She can never get them warm..
I am glad to hear that your hasn't lasted very long..

Mommyjen, She has had this for a couple of years now.... Her numbness and loosing feeling in her feet/toes are the part that has Drs. around here stumped.. And now with her having trouble walking too...She does in fact have alot of the symptoms of RSD, She has the burning, severe, stabbing pain , muscle wasting, shiny skin, which started in her wrist after she had the ganglion cyst removed. Right after her surgery it went up her arm, which is when they did the ganglion nerve blocks on her, she had a total of 2, which one helped her for ONLY 10 days, and the 2nd didn't help at all...
Since then it has went to her back, down both legs, and she gets real sharp jolts of pain through her other arm.

I just hope that we can find a good Dr. that will really help her... BEFORE this gets any worse.. Because the longer this is going she is getting worse...

Thanks again,
KellieS

Hi Theri,

I have 3 children, my youngest being 14. To watch your lovely daughter go thru this must be total hell.

I have had RSD for 5 years now. My 2 year mark was the roughest ever. Worse than delievering my 3 children natural childbirth. I have been on just about ever pain tablet from A to Z. But today I am only taking Valium.

I have told ever MD I want the root of the problem.

She has 2 things in her favor. Youth is on her side which she has a higher chance of remission. Also she has a very loving mom.

I hope today she is doing better. Love, Roz

HI,
I am sure she has it in her arm, just be sure all future symptoms aren't lumped into RSD. I had it for so long that my docs fell into that trap. I was suffering for years from fevers, rashes, pervasive pain.... then a developed chronic achilles tendonitis and it was all attributed to faulty autonimic nervous sytem and complications of RSD. AFter my son was born a doctor ran some " what if tests" My ANA came up very high at 1:1260. I have an aautoimmune disease as well. Not sure if it is Lupus, Scleroderma, or Mixed connective tissue disease. I also have very low vitamin D which can cause awful joint pain, cramps, and numbness ( I had it in my lips). Your daughter's vitamin D should be checked as well as her calcium. ANyone who has limited mobility and doesn't go out much ( most of us stay in all winter) should get vit. D checked frequently. SHe is young and there may be other conditions that she may develope or come and go. Just be sure they treat each symtom as potentially something else. Poor baby, I feel for her!