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!