I really love this forum. I am glad that I found somewhere where people understand. I can relate to people saying that people on this forum know more than many of the doctors. I have found that to be true already.

Ada and Kathy,

What kind of doctor diagnosed you? The PCP was the one that first mentioned it, but I don't know if he feels as though he can give us a diagnosis.

U of M hospital is very good. I have heard many great things about it. The other option was Cleveland Clinic. They have a program for kids with RSD. The PCP decided that we could go to U of M because of the abnormal EMG. The neurologist didn't sound like he had much faith in the EMG, and he suggested that we have it repeated by a musculoskeletal (sp?) doctor. The PCP is going to talk to the neuro, so we will find out what they decide.

Has anyone else had a situation with the EMG showing something puzzling?

Tracy

dear mom in pain,
i'm so sorry to hear about your son. he will be in my prayers. i'm 17 and have had rsd for six years. both legs, back and both arms.
i suggest Boston Children's Hospital. That is where i went and they got me out of my wheelchair in two months. They are very well known for RSD in children.
PM if you have any questions
taylor.

Hello! Not sure if there is any exact link or might be a coincidence to migraines and headaches but I would like to add that my husband did have frequent migraines that never went away before he was diagnosed with RSD. But also he did get diagnosed with RSD after a bad surgery that hit a wrong nerve.

I am truly sorry about your daughter! And if it is RSD I hope it gets diagnosed early so her chances of getting better would be high.

Oh yea..I had terribles headaches and ear pain prior to my RSD dx...I would wake up with such terrible headaches they were crippling and often!! Not sure but it may be aquainted..

Kathy

Thank you again for all of your input and support. It sounds like you have all had a similar experience to my daughter. There is definitely enough pain and enough support to go around on this board.

There are a couple more things that I want to ask about.

First, about 2 years ago, my daughter had a fever of unknown origin for about 2 weeks. The fever was followed by abdominal pain which turned out to be biliary dyskinesia (gallbladder disease in the absence of gall stones.) She had surgery to remove her gallbladder, and she felt fine. I was wondering if this could be related at all. There was a period of almost two years that she had no unusual symptoms between then and now.

Also, I have been trying to figure out what things I should look for and document in order to help the doctors diagnose her. I was going to use an infrared thermometer to check for temperature differences between limbs. I have been watching her skin for unusual discolorations, and I have been watching for swelling. I often take pictures of swelling or color changes in her skin. Is there anything else that I should look at and document besides these things and of course the changes in the pain?

One last thing, her liver enzymes were up when they did her blood work. Does that tell anyone anything? I have not seen anything online or in this forum, but I thought maybe someone had a similar experience.



Tracy

Do you live in MI? For the first 2 years of this I was in MI so have seen a lot of neurologist,pain doc, rheumatologist. I also went to Cleveland Clinic pain center and saw 2 pain docs there. There is a teen who ran a support group who is around your daughters age you may want to look into that it is Ann Arbor. She has seen so many doctors I think went to U of M though I know she did a lot of her treatment at Cleveland. If you want you can PM me. I hope you get into a doctor soon and your daughter gets relief.

I am the daughter in question.

The only thing I can think of as prior head injury is a few years ago while riding a carnival ride, I hit my head. No damage or anything. Thing is, it is hard to find pain clinics that will actually treat me, because I am a minor. We had thought about going to Childrens hospital of Michigan, but were told that U of M would be better.

I have had RSD about 3 1/2 years now. Started in my arm, with no known injury. I passed out in the shower one day & hit my foot on the drain & thats all it took for the RSD to spread to my foot.

I was actually diagnosised by my orthopeadic surgeon who had performed my knee surgery but soon after my dxs.. he referred me to my pain management Dr. who is now my RSD Dr...as he is more versed in RSD...

hugz, Kathy

I was sent out to so many Drs. and none could diagnose me. My PCP told me he wanted me to go and get a computer and help him diagnose me. It turned out he and my PA had only had one other RSD patient in their 20 years each of practice. Someone on the TOS forum actually told me what I had. I then went back and told my PCP and PA and they jumped right on it. Don't think they hadn't tried diagnosing me though. I then went up to see my TOS surgeon who sent me to a hand surgeon that was very up on RSD and he recommended a diagnostic block but in the meantime diagnosed me on paper with it along with TOS, Ulner, radial, rotator cuff, and carpal tunnel syndromes. So I guess you could say it was a very smart hand surgeon. This was before Anesteolgist got into blocks in their offices, and PM Drs. to me have found a job that can put big bucks in their pockets.

My PCP does all of my care though. He finally got tired of sending me out to Drs. that didn't know what they were doing and told me he'd just take care of me. He is a Sports Medicine Dr. and does councelling. Has taken care of high school students for years in sports. He gives me any meds I need and does research all of the time on RSD and other things.

I had no luck with Neurologist. If they can't see it on a test most of them don't believe you have it. I didn't have luck with PM Drs. either. My favorites were Anesteologist. It goes back to how much a Dr. knows about RSD or wants to learn about it.

Ada