Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
For me, I have the insurance but where I live there are no RSD specialist. If I want to find one, I would have to drive a long way to see one. Also I don't know of any doctors in NC that gives the Ketamine treatments. I am lucky that so far the medications I take help out alot even though I still have bad days especially when the weather changes.
As far as working goes, I haven't worked in 5 1/2 yrs now and so which I was able to work. I'm now 44, I was 39 when I got dx'd with RSD even though I has suffered for a very long time before I got dx'd. I recently called the Vocational Rehab out trying to work part-time. They have a plant that does light weight manufacturing stuff that helps people with disabilites earn money. I do draw disability but I interested in maybe working part-time to earn a little extra money. So hopefully it won't be long before I will be able to work at least a little bit. Right now they have a waiting list so hopefully it won't be long before they call me to go to work. My family thinks it's a good idea so I won't be stuck at home all by myself all the time. My RSD is as bad as was in the begining and I'm adjusted to my medications. So I hope to be working soon.
I just found out last Friday that I can get ketamine at St. Luke's in NYC, the HSS turned me down, said they weren't taking on any new RSD patients. I later found out they don't take Worker's Comp. One of the most highly regarded ketamine doctors is Dr. Schwartzman at Drexel in Philly, but the waiting list is 18 months or so. You can get in much sooner than that everywhere else.
I would never consider a SCS. Too invasive and risky. I've heard way too many horror stories.
The best of luck to your daughter. I REALLY hope that she feels better soon. It's awful when youngsters get sick, I'm 48. It's still stinks big time. But at least I've lived a good chunk of my life.
Ask away if you any more questions. I'm happy to help out. I've had 7 stellate ganglion blocks, 3 lidocaine infusions, and 1 lumbar block to date. My treating physician is Joseph Reyes at Caritas St. Elizabeth's in Boston, Ma. I live in RI.
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