Congratulations! It really is a load off. The other issue is medicare.

Thanks Jim!

Thanks so much birchlake!!! What is even better than the call from SSDI was that my service dog just brought me a piece of mail that had apparently fallen behind the table when my husband got the mail this afternoon. She was wagging her tail and grinning when she placed it in my lap.

It was a year of SSDI back pay and I have not even received my award letter yet!!!

I to am surprised by ballerina's experience with RSD being diagnosed in her area so often.

I also ask doctors how often they have treated RSD, or seen it.
1st Pain mgmt Doc - a doc for about 30 years when I saw him - one other case

1st neuro - doc for about 20 years - two other cases, but only one in my area.

2nd pain doc - in large city - I think he was around 50 years old - he said he saw less than 10 cases, one was my half sister. He said I could not have had RSD because I did not have dark hair growing on my foot, although he admitted all other signs pointed to it...

head of physiatry at large University - - in his late 60's so he had been a doc a long time, and has since retired - said he had seen a handful of cases. He tried to help me, but ended up sending me to Cleveland Clinic.

Well known Neuro in large city - treated me for 3 years, medications, botox, trigger points, occipital blocks, was talking intracatheter epidural block, finally wanted me to go to friend of his for exploratory shoulder surgery --- because he said that I could not have had RSD after all. Said he had seen a few cases and he cured all of them in a couple years. I didn't get better, so I didn't have RSD, must have a shoulder issue. I asked, well, what about my feet? No answer. I stopped going to him.

Foot surgeon where I get my braces made - he also takes care of the large university's athletes. He said he has seen a "few" people with RSD. He looked to be nearly 60. He asked ME who I go to so he can refer his clients to them.

Rheumatologist - she is about 40. One of my favorite docs. She was one of the first to suspect I had RSD. She thinks it is under diagnosed. She has not given me a number of people she has seen with it. But, she has been good about helping me deal with it... but has not had any ideas for me on specialists etc - but has done well with prescribing meds -- she is the one who put me on the "RSD cream" with ketamine I use, the voltaren gel, the baclofen, changed my blood pressure med to norvasc which helps the redness, swelling etc. Plus other things. I think she understands RSD - but she is not up on the very latest treatments.

Pain Mgmt doc #3 at Clev CLinic - says she has seen hundreds of people with RSD. She says that they are not only from many states, but from all over the world. She is my #1 doc for answering questions etc... but, being associated with Clev. Clinic and Stanton-Hicks - it is no wonder she has seen so many people with RSD.

My family doc - is about 50 and she has had 2 other people with RSD. One got better pretty quick, one has a very mild case. She does her darndest to help me.

I have never met anyone else with RSD other than one woman who is in my service dog club. My half sister had it, but I didn't know it until after she passed away. My asthma doctor's one nurse has a husband that is supposed to have it - my asthma doc asked me who I go to so he might pass the info on to the woman's husband.

Maybe it depends where you live. I live in a small town, but within an hour of a really large university in a pretty large city that has 3 large hospitals. Yet, I can't find a doctor that knows anything about this without driving 3 hours to Cleveland.

Juli

OH -- and Ballerina on the SSDI -- I have had mine now for about 1 year - and I can't get used to it yet. I didn't have a lawyer either and mine was first time. Maybe they are starting to see the light on RSD? I had several other things like Peripheral neuropathy, some neck issues, fibro, my feet keep fracturing... etc. too... but still it seems a few people have not had lawyers, and got their SSDI first time on RSD lately.
SO happy for you!

Thanks daylilly.

My pain management doctor did his fellowship at Beth Israel. They are doing some of the cutting edge research on CRPS. In addition to his training he is very interested in treating CRPS patients. My pm doc also refers his CRPS patients to Dr. S in Philly for a second look. My Neuro is very young but also well trained in CRPS. I know he is not the only neuro in his practice to treat CRPS because one of my husband's colleagues with CRPS is being treated by a partner in the practice.

My primary care physician first learned of CRPS 10 years ago when his PA was diagnosed. That is how he is up to speed. I was diagnosed by a physician who was the director of our local Hospital emergency room. He was extremely knowledgable and set me on the right path.

That is not to say I didn't have to kiss a lot of toads until I found my Princes. Believe me I kissed my share. The biggest toad was from the world renowned Blaustein Pain Treatment Center at John's Hopkins Hospital. I became real good real quick at interviewing and rejecting doctors, PT's and Neuros. I visited many before I was satisfied with the team I have now.

Of the four colleagues we know of three have been evaluated by Dr. S in Philly and all three were awarded disability, on first try. The fourth was in a wheelchair and had severe dystonia for over a year but now is in partial remission, out of the wheelchair and is working full time now as a teacher.

I live in a very small town. Before CRPS I could have danced across it. Just after I was diagnosed our vet told me of a woman in town who had CRPS for over ten years. I knocked on her door and introduced myself to her. I was so happy to find someone who could provide me with first hand experience. I will never forget her words to me as I left her home. "CRPS won't kill you but you will eventually wish that it would." She has since passed away but her words very much set the tone for my approach to confronting my CRPS.

I truly do not believe that our disease is as rare as once thought.

I certainly hope that your experience with SSDI, my experience and the experiences of those my husband and I know of will become more common for folks with CRPS. I pray it does!!!!!!!!!!!!

A very closes intensely private friend, who was the reason I went to Hopkins in the first place, is in remission for the second time. While at the library one day a woman with a purple leg was softly crying and was having muscle spasms and attempting to stretch her leg out while a library employee was suggesting that she was disrupting the library and blocking the isle. I suggested to the employee that if she was not acquainted with the ADA perhaps her continued actions would cause an introduction to the ADA that she would not like. This woman, who was obviously in pain thanked me and shared that she had a rare pain condition called RSD. She was so relieved when I told her she need not preach to the choir. We have since become good friends but she has recently moved to Reston Virginia where she has only interviewed toads. If anyone knows of a good CRPS doc in that area would you please post it on that CRPS doc thread?