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DiscussionCamptocormia (bent spine syndrome or BSS): Looking for others
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Replies to "Hi @laurie386 I see that you recently joined Mayo Connect, welcome! The answer to your question..."
Thanks for getting back to me, Teresa. I have been fortunate to get on the workout band wagon, and I am pretty sure I have kept things, i.e., muscles, from getting weaker. With only my para-spinal muscles affected, I have been working out in group exercise (because I am not very self-motivated) to build up the secondary muscles in my back and legs and arms and torso. My question is that I'm just wondering if I am missing something that could be a cause of my condition and that could be addressed. Back in 2002, I told my neurologist that I wanted a second opinion after the diagnosis I received from my neuromuscular physician in Denver, CO. He recommended either the Mayo Clinic (closest is in Scottsdale, AZ) or the University of Utah in Salt Lake City. I tried to get an appt in Scottsdale, but was turned away for what I thought was an unclear reason---they already had their quota of Medicare patients. I got into the University of Utah and was told the first diagnosis was correct. The only difference was that I got the name Bent Spine Syndrome. Naming an affliction actually is comforting. Anyway, this is where I am now.