You are right, of course, Kitt. CMT can present in lots of ways. I should have phrased my reply more carefully. My childhood clumsiness was very significant to the neurologists in determining a hereditary neuropathic process. At the time I was first diagnosed I didn't mention the symptoms on my father's side since we have never been in contact. My half-sister wore leg braces from childhood, but I didn't make the connection at the time, and my father and his sister may have had symptoms as well. Mine is axonal, type 2, so earlier onset than some.
I have just turned 50 and have had considerable deterioration in the past 4 years. Numbness first appeared about 15 years ago, progression was very slow at first, past my knees now with pins and needles in my thighs and hips.

I only meant to say that a sudden and serious onset like Shezian's is probably not CMT. I haven't read anything in her posts that would seem to support a diagnosis.

Just wanted to say after reading all your responses. Is that l have for about 5-6 years been experiencing numbing of my right big toe. It used to come and go, a few times per year, lasting for a few weeks. I never thought much of it, and just ignored it. Now l am wondering if it is related to PN?

Hopefully it will not get too much worse than what is is now. It has all settled now, l just have painful feet, mainly on top when l walk or run, and standing can be painful on my legs.
If it stays this way, l can deal with it easy. But knowing that it all may have started in my right toe, shows it may very well be a progressive PN.

Would l be right in saying this?

Sue

Yes, this could easily be a progression from the numbness in your toe, at least in my experience. The pain on the tops of your feet and the pain in your legs would all be consistent with my progression. A shortening and deterioration of the muscles in the back of your ankles and legs can cause that type of pain. How are your muscles? Can you easily do a seated forward bend or are your hamstrings and Achilles tendons unusually tight?

mine started with numbness in the big toes of both feet at the same time.

Yes l am able to bend forward from sitting position.
Yes, the back of my legs feel a bit tight. Geee, l hope this isn't going to progress fast. I have a family to raise first!! Hopefully l can do it without a cane or wheelchair.

Sue

How old is your youngest? I still have children at home. My youngest is 13 but has special needs, so requires considerable attention.

My twin girls are 10 years old.

Sue

Sue, did you're neurologist test your feet with a tuning fork?

Yes he did l think at the initial appointment when l went in to see him, for my floatiness, spaced out feeling. That was 6 months ago.


He then saw l had early signs of NP, but had chosen to not tell me until just recently.

Not sure why he didn't tell me then.

Sue

Yes, he certainly should have told you so you could start supplements and food changes EARLY.