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Old 08-29-2013, 06:23 PM #8
Susanne C. Susanne C. is offline
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Join Date: Jul 2011
Location: Mid-Atlantic coast
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Susanne C. Susanne C. is offline
Member
 
Join Date: Jul 2011
Location: Mid-Atlantic coast
Posts: 721
10 yr Member
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Quote:
Originally Posted by mrsD View Post
This sounds very much like CMT... with the muscle wasting aspect. There are DNA tests for this, but they remain very expensive today. And so far, there are no treatments (supplement or drugs) to halt progression of this type. So pain management is all you have left.

You might benefit from reading the CMT websites, as they have drug lists to avoid (which make CMT worse), and lifestyle suggestions:
http://neurotalk.psychcentral.com/thread121564.html

Charcot Marie Tooth is not the most common form of PN. There are over 100 types of PN, and therefore many ways to help individuals with various triggers. CMT however, remains untreatable to prevent progression. Avoidance of some of the toxic drugs may help slow progression in some patients.

We had a poster here a few days ago talking about gadolinium
reactions from MRI dye...
here is a list of possible symptoms:
http://gadoliniumlawsuit-info.com/ga...emic-fibrosis/

This is the post:
http://neurotalk.psychcentral.com/post996197-33.html
you might want to talk to this poster privately.
Since you had 6 MRIs, I thought to mention this issue for
you to consider. Doctors may be obtuse and reluctant to
reveal this side effect to patients.
I agree, the loss of muscle and pain level are both similar to what I am experiencing, it does sound like CMT. Worth investigating.
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