Guest guest Posted February 13, 2006 Report Share Posted February 13, 2006 now the are talking that i have both neurosarcoid amd ms, WHAT ARE THE ODDS IN THAT. TONY Tony, I so totally understand. It seems like this path is the longshot of life--and here we are. Playing the lottery is truly a better idea. As far as having both NS and MS-- it happens--but I suspect that you have just NS. I say that because NS mimics MS--and many of us have had both diagnoses before the MD's relized that it was NS. When sarc hits the brain- we get the demylination of our brains (generally the base of the brain) and the ends of the muscles and ligaments from ie. fingertips upward, instead of spinal cord down. That's a huge part of the peripheral neuropathy and why it hits us the way it does. I know many of the members spent years on the treatments for MS, only to have it be NS. This sounds cold- and it isn't meant to be-- but if you can hope for one or the other--go for MS- they know how to treat that. You seriously need to be on some other immunosupressant than the pred. Your disease is much more advanced, and the pred is just masking the problems. Take it away, and you're in sarc hell, and the sarc is advancing and destroying your body, without treatment. The articles and sites on Remicade and Enbrel and Humira--articles written by Dr. Om Sharma and Dr. Baughman (these are the 2 top specialists in the states) are so very informative. These two MD's are cutting edge, and I know from having been part of the Remicade Clinical trial in LA that it has made such a world of difference for me. Tony, I'm not a doctor, my knowledge comes from the research I've done, and that many of our members have done and shared. I've been battling this disease for 15 yrs, and it went systemic and neuro 5 yrs ago. I've spent part of the last 2 yrs on Remicade and my short term memory is still impaired, as is my problem solving skills. When someone talks with hands and action, and I can't follow it at all. It just confuses the hell out of me. Back to the chance of MS and NS. We do very very often have more than one auto-immune disease going on at a time. For us, that's why you'll hear this disease called "suckoidosis." With deep empathy, Tracie NS Co-owner/moderator Quote Link to comment Share on other sites More sharing options...
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