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10-23-2012, 07:29 PM
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#31 | ||
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No problem Susanne. I understand. Actually I don't have a definitive diagnosis of CMT. My neurologist could not determine the cause of my neuropathy from the blood work and EMG, so concluded that is is either CMT, or idiopathic.
The genetic testing necessary for a diagnosis is, as you know, very expensive, not covered by my insurance, so the neurologist recommended against doing it. So, at this point, it could be CMT or idiopathic, and I am, frankly, just blindly searching for answers. |
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| "Thanks for this!" says: | Susanne C. (10-23-2012) |
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10-23-2012, 07:50 PM
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#32 | ||
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That is very frustrating, but I understand. Your neurologists are right about the testing, it is expensive and there are not tests for all variants, so can be inconclusive. I refused the testing as well, with the blessings of my doctors. Idiopathic PN is a frustrating diagnosis, it tells you nothing. CMT is progressive and incurable, but gives you something definite to refer to.
Were there things in your family history or childhood/adolescence that supported a diagnosis of CMT? |
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10-23-2012, 08:15 PM
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#33 | ||
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No, nothing. Actually, in her report she stated that she suspects CMT, I suppose because she could not find an actual cause from the workup she did, but she did not make a definitive diagnosis.
Although I understand your preference for certainty, until I am convinced that my neuropathy is CMT, I plan to continue to search for treatments which could possibly bring me long term relief. This may be unduly optimistic, but I am not quite ready to accept a CMT diagnosis. |
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10-23-2012, 09:20 PM
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#34 | ||
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Quote:
Good luck. You will benefit most fom the nutrition and supplement info here. Read everything. |
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| "Thanks for this!" says: | RonJ (10-24-2012) |
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