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RSD and lack of medical treatment in MN


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I am sooooo frustrated. I was dx'd with RSD last December at stage 2 by my wonderful orthopedist. I've had it for about 2.5 years now. He didn't feel comfortable treating the RSD so he referred me to a physical medicine doctor. He admitted after about 6 months he has not had much success treating RSD. I was referred to a neurologist. This guy shot me down within the first 30 seconds. This guy wanted to know why I was there. I told him about the previous doctor and said I wanted a doctor that knows about RSD. He said no doctor knows about RSD. He emphatically told me RSD never spreads, even with a second injury. When I asked why I am on fire from the neck down and have difficulty wearing clothes he said he didn't know...he asked me why that could be. When I asked about my dental appointment and having extensive dental work done he said, no problem. RSD will never go into your mouth or anywhere else. He referred me to a rhuematologist because he said neurologists don't know much about RSD and people with RSD are treated by rhuematologists. My muscles in my legs become so weak they wobble. When I mentioned that he said the is impossible. He also wants me to attend a chronic pain clinic. I was encouraged by that so I called the intake coordinator. She said the treat with vigorous physical therapy, hot tubs, ice, etc. I said RSD should not be iced, nor should we have vigorous p.t. She said they treat RSDer's the same as people with back problems and migraines. "No Pain, No Gain". I told her I realized it is important for people with RSD to remain active, but the no pain, no gain does not apply to RSD. She just laughed! There is no way I will attend that place. Does anyone have any advise as to how to obtain medical help? I have tried to find a doctor in Minnesota that knows RSD, but am having no luck. Those that claim to know RSD give me misinformation and I will not risk my health to preserve their tender egos. I have the utmost respect for doctors that admit to not knowing and those that waant to learn and are open to the fact they might be wrong. This Neurologist was completely wrong in what he told me. He said RSD pain is severe, but I would have to learn to live with it. Treating RSD is pain control. I've had 9 lumbar sympathetic nerve blocks, TENS Unit, Neurontin (2700 mg), Clonodine (.02 mg), Naprosyn EMLA cream and Celexa, and even acupuncture. I have cognitive problems and bad burning, pressure type headaches. My eyes have trouble focusing and wobble. My muscles are very weak and walking is difficult at times. This neurologist told me none of that is realated to RSD. I have a health plan that requires me to stay within this clinic group. I am on limited income (long-term disability) and from that I pay $730.00 a month for Cobra health insurance. I pay all my bills and live on $639.99 a month. They say stress is not good for RSD, but I'm finding I have the most stress finding a doctor. Any advise would be greatly appreciated. Thank you.


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