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Old 06-05-2014, 12:06 AM
Jon_sparky Jon_sparky is offline
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Join Date: Jul 2013
Posts: 145
10 yr Member
Jon_sparky Jon_sparky is offline
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Join Date: Jul 2013
Posts: 145
10 yr Member
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Quote:
Originally Posted by Kitt View Post
Just curious if the doctor/neurologist you are seeing knows CMT. If in fact you do have CMT, there is no cure/treatment for any of the types of CMT. They are doing lots of research but so far nothing.
I don't think he knows much about CMT, when I gave him the list of family members, his eyes kind of glassed over. I did mention CMT, but since I have exceptional balance, even with the high arches, toes starting to curl, and calf cramps, he is kind of reluctant to Dx me for CMT...
He was the best I could do locally, he is experienced in nerve conduction studies and skin biopsies for SFN, so that is something. There are no doctors in San Diego that are experts in CMT, I would probably have to go to Los Angeles, the city I loath.
The way I see it, I am resigned to the fact that after 30 years of suffering from this, there is no cure, I am not planning to have any kids because I am a monk, so the Dx will be mainly to see if I can find out about the severity and possible progression, and get meds to cope with the pain.
Does this make sense? Is there any justification for spending the money for the DNA test? BTW, I am a cash patient, as we are not insured, but I gt all my medical paid for. If it is a couple of thousand for the test, probably not much help for me. the nerve conduction was estimated at $1,300, and who know how much the skin biopsy will run.
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"Thanks for this!" says:
Kitt (06-05-2014)