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Old 01-23-2014, 10:25 AM #10
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,440
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,440
15 yr Member
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Quote:
Originally Posted by Susanne C. View Post
You are not, as far as I know, damaging your feet by exercise, running, etc. you may find that you have more pain on days that you are very active, but this is not a sign that you have damaged them. I do not know how they determined through blood tests that you did not inherit this, unless the testing was the very extensive and expensive Athena panel. Did your father drink excessively?
If it is an alcoholic neuropathy you should pay attention to the supplements recommended here, and if you stop drinking you should recover, at least partially.
If it is a hereditary neuropathy it will progress, but it may be very slow. It is impossible to predict the future with this disease, and while I know how hard it is not to worry, you may be able to function at your current level for a long time.
As you are an athletic person and still retain the coordination to do your job, I think the outlook for you is excellent. It is hard not to catastrophize when you are first hit with this, but you will develop coping skills.
Gabapentin does not relieve the burning in all cases, but there are many other ideas here, some over the counter, which provide a measure of relief.
My symptoms started in childhood with extreme lack of coordination, progressed to numb toes by my early 30's, and have taken over my arms and legs at 52. As Kitt said there is no pattern that we can point to for when this hits and how it progresses, but I think you will find help here.
I was wondering too as Susanne pointed out. What type of blood tests were done. DNA blood testing thru Athena Diagnostics would be the way to go. However, it is very expensive even if you know what DNA blood testing should be done. Also, just because they do not find anything that does not mean that you do not have a type of it. (Speaking mostly about CMT). I hope you get an answer soon.

Also, in the case of CMT overdoing can exacerbate it. There is a fine line there.
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Susanne C. (01-23-2014)
 

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