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Old 01-16-2012, 10:29 AM
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,429
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,429
15 yr Member
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Quote:
Originally Posted by Susanne C. View Post
I am hoping to hear from anyone that has CMT, although I know that that is only a small minority of readers here.
My diagnosis was delayed until I was in my mid forties, complicated by my family background. I do have a half sister who wore leg braces from childhood, but due to my Mother's persistent denial of who my real father was I did not connect this with my own symptoms.
I have three biological children. My oldest son, at 27, is having significant symptoms and I feel guilty. He is only home from China for a few weeks and does not have health insurance here, but he seems to need some kind of ankle bracing. He falls a lot and walks on the outside edges of his feet, rolling his ankles. His ankles have always been weak and he has preferred high shoes or boots since childhood. He is also 6'4" which does not help with any length dependent neuropathies. (I am 6'2"). He does not experience pain but is having pins and needles and bi-lateral carpal tunnel like symptoms when he plays the piano or video games. This was actually what sent me to the first neurologist who completely missed the significance of it. It took a podiatrist to spot the real issue.
How do you deal with the feelings that arise from watching your child develop a progressive disorder that you passed on to them? This is the same son who inherited Asperger's syndrome from me, so we are very close in a detached sort of way.
Hi,

So you and your half sister have the same mother. Is that correct? That's how I am reading your post. Different fathers but the same mother.

You say that your half sister has been wearing leg braces since childhood. Has she been diagnosed with CMT? If so, it does appear that you and your half sister acquired CMT from your mother even though your mother does not have any apparent symptoms? If your half sister does not have CMT then you perhaps acquired it from your father.

Does your son have a confirmed diagnosis of CMT? Do you have a confirmed diagnosis of CMT?

People inherit all kinds of things. It isn't anyone's fault. You should not blame yourself. Just see that he gets the help he needs as the condition progresses.

I am just trying to get a clear picture of the whole situation. I am not an expert but I am trying to help. Take care.

I have information under PN Tips, Resources, etc. concerning CMT.
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"Thanks for this!" says:
Susanne C. (01-16-2012)