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I am esperately lookin to connect with other individuals with SPS. I have ;ooked at a variety of forums on the we and have found that the SPS sections are usually sparsely attended or have not been utilizred in monthe and sometimes years. Are there other SPSer's on this site? I am feeling quite alone and have many questions about life with this syndrome.
-------------------- "Nothing ventured, nothing gained" -my Grammie Posts: 1 | From: MA | Registered: Nov 2008
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Aidan416, I was diagnosed with SPS in April of 2009 & I agree there isn't a lot on the web groups. If I find any thing I'll let you & know & please do the same. In the mean time we have each other. Gananak
Posts: 1 | From: Buford, Georgia | Registered: Nov 2008
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Hi to both of you. There is loads of information out there, STiffperson Syndrome is a very rare disease. I have had it since 1998, Finally diagnosised in 2000. It seems that the disease is so different with each patient. I have done research at NIH. I currently am working with 2 research Dr's. The great part of my story is my symtons have left me, I hope forever. But only time will tell. I nly take meds for seizures. Which seems to control all. But after all this time.Maybe it scared it away. :-)) I know of another person in Ga. who has it. I have met her. She is a joy. Reply if you wish. Good Luck and dont give up.Myrna
-------------------- Myrna Warner Posts: 1 | From: Stiff Person Syndrome | Registered: May 2009
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