My Daughter was recently diagnosed with RSD. She has been seen my a Orthopedic and a Pain Specialist. But not by a neuro doctor. Both doctors she has seen both agree she has RSD. The test that was done in the pain specialist office was to test the temps in both her feet. Her foot also changed colors while in the ps office. Does she need to see a neuro doctor/ She has had on nerve block so far and on meds. She is in college and near home so she has gone with her trainer from the university for these appointments. Any help would be great. Have read a lot from the RSD website.

I am so sorry about your daughter diagnosis. Hopefully she has good doctors that will treat her RSD aggresively & have caught it early. That is her best chance of any type of remission. If her Pain Managment Doctor or Ortho think she needs a Neuroligst I am sure they will send her to one. If you want a second opinion (or thirs in this case) or are not happy with the treatment plan then see one. I dont currently see a Neurologist and have had a RSD DX's (disgnosis) for 2 1/2 years. I have had to go occasionaly when my PM (pain managment doc) had needed a test done he couldnt do but I dont see him regularly. I think some people see Neuro in place of Orthos or other docs. Its really who will treat you & you work the best with. RSD is a tough disease to find good doctors. Many of us & have had a hard time even getting a diagnosised. Let alone finding good doctors to treat us & treat us well. If you find good doctors stick with them. It sounds like they are doing well by your daughter. I really hope for the best for you & your daughter. Take care.

Tammi,
I too, am sorry to hear about your daughter's dx.
I have had rsd for 26 years.
Cam you tell us what caused it? Was there an accident, or injury?

Anyway, we currently have two mom's with their daughter's, and also a sweet young lady who has this monster.
WE got some real good news today.

I think, I hope that these ladies will be in touch with you!
You can go private if you wish.
After 26 years, I know it took 7 years for my dx. Too long.
I'm too far gone, and live on pain killers (methadone, and a cocktail of others).

Get your daughter to a Neurologist that is KNOWLEDGEABLE with RSD! He'll take it from there! (When I say a Neuro who's Knowledgable, I mean exactly that! Where do you live? Near a city? A good hospital? A university hospital? That would be great, get to the "Cheif of Neurology"!
Don't Wait!
TIME is now of the essence!

(What type of doctor(s) have dx'd her? Have they sent her for any treatment?
What are they saying?

Please! You have a short window of time to "cure" her now! TAke it by the horns, and do it!
The Cleveland clinic, Philly, There are many good doctors, thank God, when I got this, there were hardly any!

Read the current threads, and PM or write to those "Mom's" who have just gotten some, or are about to take steps for their daughters!
Take a page from their "book"!!!
As I said, Time is Critical!
Even if you must pull her from school for a short while!

Do what you must, so that you daughter doesn't live a life, like I am!

PM me, if you wish....

love and Prayerss..

Pete

asb

My daughter is a swimmer and injuried herself on day at practice. They said she had Extensor Tendonitis. She was fine after treatment for about week or so and her foot started bothering her again. It took a bit they finally got an MRI done it found nothing. So they took her to an ortho that specializes in foot and ankle. He said after looking at her foot and talking to her he said she had either RSD or Neuritis and sent her to a pain specialist. The pain specialist is the one that said she had RSD. She had a nerve block this past Tuesday. She started having these symptoms beginning or so in October. We live near Houston Texas and she is in school near Charlotte North Carolina. But she does not have a car at school and has to depend on the trainer to get her to her doctor appointments. Any thoughts would be great Thanks.

Hi Tammi and welcome to neurotalk, though sad about your daughter. I am 61 and have had this for 15 years, now full body and internally. I wasn't diagnosed for 4 years and then was misdiagnosed. Knew RA was wrong, so went to a ortho hand Dr. diagnosed me in 1 minute, nuclear med test confirmed and got into pt next day, ordered a tens unit for hand. I came back home and found a neuro and ortho hand doc who also had experience with RSD and his pt's had experience with rsd. When I went full body, I needed a psychiatrist who also was a neurologist and pharmacologist. Really happy to find a wonderful, caring doc who skilled at rsd.
i agree with Pete, I'd fly to whereever to get a good rsd doc. Her best chance of remission is now, I actually went into remission twice, following pt. during that first 4 years, not knowing what I had. This is a rough disorder, which makes it impossible for some to go to school, others can. I am mobile, with just one hand partially crippled-got into pt too late. You can't go back, so get the best help that you can get now. I'm going for HBOT after first of the year.My Dr. built two clinics that each have one. Please ask anything you want, and we will help as we can. Please know we understand and care about you and your daughter. Take care, loretta with soft hugs

Tammi,

I went the same route, except it took 3 orthos to get the diagnosis and then went to the pain doctor. I never went to the neurologist. the most important person(s) we saw were the PT's . the 2nd ortho at least sent us to PT. I learned a lot here on this forum. I learned not to ice, but to heat. I got a lot of support, and writing about it really helped.

The other very helpful thing was to get my daughter into the pool. That really helped with desensitizing her. The pain Dr was able to put my daughter on Neuronton, which also helped. A rice bucket made for good home PT.

Currently my daughter can now wear shoes, socks, etc. She can even walk with padding on her foot/in her shoe. She still has pain, but its no longer on the higher range, aka from a 5-10, but more from a 1-6.

I have the same questions as the others. Was there an original injury? How long until the diagnosis?

Hi Tammi,

I have a daughter that is 16 years old, her RSD started in her left ankle, unlike you it took too many years to diagnose her. She has gone through two pain Rehabilitation programs and has had 4 sympathetic Nerve Blocks a multitude of opiads and in July of this year she went through Ketamine Infusions and had Ketamine boosters two weeks ago. She is now close to being in remission.

We now see Dr. Kirkpatrick in Tampa, Florida. He has been amazing. Being that your daughter is in NC and you are in Texas, my advice would be to make sure that she is seeing a doctor that knows RSD. Your daughter is in the beginning stages of this disease, you need to go full speed ahead, get this under control immediately, don't wait. The sooner you get it under control the more likely you will see remission. Feel free to PM me if you have any questions. I know of two other teenage girls on this forum that are getting ready to undergo the Ketamine Infusions. But, they have been suffering for a very long time.

Was the the nerve block successful? Did her leg and foot heat up? Make sure she stays in the pool, that is the best therapy for RSD. What is she taking for pain? Is it possible for a family member to be there with her? She will need someone to help her. My prayers are with you.

SandyS

Hi, I'm new to this forum, but I would really like to say thank you to everyone that has been giving advice on here, I have been reading it and finding it really useful. I'm 21 years old and got diagnosed with RSD in September 09, having had leg problems since I was 11, by the time I was 15/16 I started relying on steroid injections to walk. In September the steroid injection didn't work, that is when they diagnosed RSD. I haven't been able to walk in 7 and a half months, and my leg is getting progressively worse. So I would just like to thank you all for all the advice that you give people, whether directly or indirectly by posting on a forum which anyone can read.

Hi I have RSD and I have a great pain doc and ortho who takes care of me. My ortho is in Statesville, NC. He is very knowledgeable in RSD. His name is Richard Adams. He works with Peidmont Health Care. He is in his 70's, but he is great. If he retires I don't know what I'll do. He works hand in hand with my pain doc. Douglas Prichard. They are a great team. It sounds like her doc's are doing good though. Im 28 and have had RSD diagnosed for 2 years. I truly believe that I've had it since I was in high school. I first had a temp test done, then a tri-phase bone scan done. Mine had been so long that my spinal injections did not help. I then did a epidural block and was unsucessful. I was told that I would have had a better chance for a cure or remission if it was treated early. I now have the SCS and it helps great for the pain in my foot and leg. I wouldn't advise anyone getting one without careful consideration because it is very invasive. I just fell and messed mine up and will be having surgery to fix it. Good luck and hope your daughter does well. If you ever need to change docs you can look mine up on the internet. He speciallizes in the SCS.

Hi Kate. You may want to start your own thread cause this original post was so long ago. I am sorry you are in such a bad place. I see you are in the UK but is there a pain doc who deals with RSD near you? How did your leg problem start? Have you had dx tests done to rule out another condition? The longer you are not able to use the limb the worse this condition gets. Are you or have you been on any meds? What about blocks? I think you really need to get in to a doc asap who deals with rsd but also to see a possible neurologist to rule out other conditions. Sending thoughts and if you want an email buddy I am here.