Hereditary neuropathy CMT question
 

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.

No, sorry for the confusion, mother was an adulteress, same father, different mothers, and no way to contact these people, since it was long ago and they certainly don't want me to pop up in their lives. All I know is that one of his legitimate daughters has worn leg braces all her life. I have no medical history on my father's side because he and my mother were married to different people, and it is all very Peyton place like.
My diagnosis is confirmed, son teaches in china and is only home for a month long holiday. We cannot afford to take him to a neurologist and there is no treatment anyway, I was just wondering if anyone has had this experience of watching a child develop symptoms. He sees the deterioration in me more dramatically since he only comes home every two years and he is worried about his future.
Thank you for replying, Kitt.

Cmt
 

Hi,

CMT symptoms vary greatly even within the same family. Not even a doctor can predict how a person with CMT will end up. There are many many types of CMT. Thanks for the information. I wish you well.