Questions, questions
Beka, please chime in on these questions too...your knowledge base is much appreciated and respected.
My local neuro (a new one) thinks my CD of twisting motions look like dystonia. My recent visit to the neuromuscular disease specialist at UAB thought there might be some dystonia component there, and wants me to send the CD to "the" dystonia man there at UAB. I saw him last winter but he had not see the CD, and he sent me to the neuromusc specialist there --- she found polyneuropathy. She has me on Klonopin 1mg at night, which has reduced my spasms & twisting by 1/3 at best. When I told her I had been training all summer to run a 5K, she was quite displeased. She said I couldn't have picked a worse thing to do with denervated legs than to pound them on pavement. I hadn't looked at it like that at all, my only thought was to become as healthy as possible at 53 after having been very sick for the last 3 years, and to be an inspiration for my 2 daughters who are doing this too. The 5K is for the Susan G. Komen Race for a Cure. I really love running and don't want to give it up unless I really have to. My questions are =
1.) Will continuing to run make the polyneuropathy itself worse or am I putting myself at risk for injury like falling and breaking an ankle?
2.) Shouldn't someone be trying to find out what KIND of neuropathy this is so I'll know what the prognosis is?
3.) Do you know if sometimes neuropathy and dystonia go hand-in-hand?
4.) I am on no med for the neuropathy. Does a med like Neurontin control the symptoms only or slow the progression?
If there are holes in the story that need to be filled in, just ask away.
Thanks to anyway who can help guide me. Google has been most uninformative, and my UAB dr was in a rush.
~Connie~
My local neuro (a new one) thinks my CD of twisting motions look like dystonia. My recent visit to the neuromuscular disease specialist at UAB thought there might be some dystonia component there, and wants me to send the CD to "the" dystonia man there at UAB. I saw him last winter but he had not see the CD, and he sent me to the neuromusc specialist there --- she found polyneuropathy. She has me on Klonopin 1mg at night, which has reduced my spasms & twisting by 1/3 at best. When I told her I had been training all summer to run a 5K, she was quite displeased. She said I couldn't have picked a worse thing to do with denervated legs than to pound them on pavement. I hadn't looked at it like that at all, my only thought was to become as healthy as possible at 53 after having been very sick for the last 3 years, and to be an inspiration for my 2 daughters who are doing this too. The 5K is for the Susan G. Komen Race for a Cure. I really love running and don't want to give it up unless I really have to. My questions are =
1.) Will continuing to run make the polyneuropathy itself worse or am I putting myself at risk for injury like falling and breaking an ankle?
2.) Shouldn't someone be trying to find out what KIND of neuropathy this is so I'll know what the prognosis is?
3.) Do you know if sometimes neuropathy and dystonia go hand-in-hand?
4.) I am on no med for the neuropathy. Does a med like Neurontin control the symptoms only or slow the progression?
If there are holes in the story that need to be filled in, just ask away.
Thanks to anyway who can help guide me. Google has been most uninformative, and my UAB dr was in a rush.
~Connie~
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