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Old 08-14-2015, 08:11 PM
paty91356 paty91356 is offline
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Join Date: May 2007
Posts: 8
15 yr Member
paty91356 paty91356 is offline
Junior Member
 
Join Date: May 2007
Posts: 8
15 yr Member
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[QUOTE=Kitt;1162708]So is it CMT? And if so do you know the type? I have CMT. Does anyone else in the family have symptoms?

I am 83 years old, and I have been diagnosed for about 22-24 years...started with the usual numbness in feet, and progressed very gradually for until about 12 years when neuro-muscular problems began to develop..increasing weakness in legs, poor balance, etc. I now use a triangular shaped walker for security with my bad balance and I am not able to walk distances, and tire from walking and standing activities...

My daughter is now 59, and she started with the foot numbness about 6 years ago, and it is progressing just like mine did. NO FAMILY HISTORY...my Dad lived to be 87, and never had (or at least complained) of any numbness or leg weakness..however, he DID walk "like a drunken sailor" as he got older. .."ataxia")..My Dad came from a large family, and all of his relatives lived in Canada, so I didn't see them as they aged...however, I have corresponded with a cousin who lives in Canada, and she tells me that NONE of the brothers, sisters or cousins had/have any thing like this. My Mother's neurological family history is completely negative.

My daughter and I are both nurses, so we understand medicine and illnesses pretty darn well! I was diagnosed by Chief Neurologist at USC in So. Calif., so feel confident of the diagnosis..I have had several EMG tests over the years, also the gene testing by Athena Labs. My daughter works for Kaiser, and she has been tested by a Neurologist, and he compared my Lab results with hers, and he says we both have the same varient on the gene, but he isn't as positive about the CMT label, as my USC doc is...no matter why, nothing can be done or changed by the diagnosis.

I know my Neurologist very well, as he treated my late husband, who died from Lou Gehrig's Disease (ALS) 19 years ago. I saw my Neurologist yesterday for my annual (or bi-annual) visit..he still says "CMT", late onset (because of my age, and my daughter's age at onset.)

I have followed the CMT website online, and my daughter and I don't seem to follow the pattern that most of them have..one difference is that nether of us have ANY pain with our neuropathy! How's that for unusual, and lucky!!

I've tried Gabapentin, High dose Vit B Complex, B-12, Co-Enzyme 10, and any other OTC supplement you can name..NO IMPROVEMENT OR CHANGES!

We just don't fit any "usual" pattern...
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"Thanks for this!" says:
Kitt (08-14-2015)