NeuroTalk Support Groups

I just learned of this website from a forum for victims of fraud. Liz, a fellow victim, mentioned a website for people with rare neurological disorders. Can you imagine our surprise to learn that she and my husband both have RSD? In addition, my husband's family has a very strong history of Ocular Pharangeal Muscular Dystrophy. His late father and both of his brothers have it; Ben has not shown symptoms at this time. (He is the youngest sibling, so we don't yet know if it may skip him or not) This extremely rare form of MD involves the muscles of the eyelid and throat, so the main difficulty is keeping the eyelids up (surgery can help this) and swallowing. By the age of 65 most sufferers need feeding tubes to survive.
My husband's main problem is the RSD resulting from a work related accident that occurred in 1997. He dropped a 65lb. railroad car vibrator onto the top of his foot, permanently damaging the pereneal nerve. He now has severe burning pain in both feet which sometimes travels up his legs and into his lower back. A few months ago, it started to appear in one of his elbows. After a decade of trying surgery (to "free" the nerve, which was totally unsuccessful), every drug known to man, spinal injections, numerous nerve conduction studies, etc. he finally had to go off all prescription drugs because he was losing his vision as well as his cognitive skills. His doctor recommended acupuncture treatments as a last resort; he has been getting them weekly for 15 months and they are keeping the levels of pain to tolerable levels if he stays off his feet most of the time. He was granted Social Security Disability about 6 months before we learned that our mortgage broker declared bankruptcy and had not been forwarding the mortgage payments of over 800 people to the lenders, but used it for his own interests. The banks are telling us we have to pay about $50,000 that we already paid to their broker over again, sending it directly to them. We are trying to set up a class action lawsuit against the lenders because we feel it was their responsibility to monitor the actions of this person; we paid him, if he didn't forward it to them, it is not our fault. All of this is very stressful for my husband...he has nightmares and panic attacks since this started.
We don't know much about RSD, and we didn't know anyone else who had it until we met Liz on the fraud victims forum. She directed us to this website where we hope to find out more. Ben has not seen a neurologist for over two years. There aren't many in our area, and they don't want to take Workers Comp patients. The ones he did see told him there wasn't anything else they could do for him unless he decided to go back on prescription drugs in the future. I'm hoping that the info and experiences of others will help Ben deal with his depression and anxiety.
Thank you, Liz, for referring us to this website.