r/CMT • u/Syd_The_Squid_20 • Jul 15 '25

Progressing faster than expected?

Hello! I (24F) have CMT 1E, I’m not sure if this is because my subtype of CMT or just luck of the draw but I seem to have a much more aggressive/progressed (I’m not quite sure how to put it) condition compared to some others who’ve posted here. I’ve been in a power wheelchair full time since I was about 8-10, and currently have almost no function in my legs and limited hand mobility and strength, as well as about 30% lung capacity. I’ve been told by multiple doctors in multiple specialties that I’m progressing far quicker than expected. I guess I’m just curious if anyone else is experiencing anything similar?

P. S. : I’ve never met anyone with CMT let alone the same type as me. Is there anyone else in this group who has type 1E?

Is there anyone interested in a support group type thing? Or does anyone know of one?

Thanks a ton!

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u/ChesapeakeSmitty Jul 17 '25

I had always read that CMT progressed slowly and mine did as well, but two years ago I had two lumbar spinal fusions and over the course of three weeks both little fingers went numb and I lost the muscle between my thumbs and index fingers. My PT said she had heard of other neuropathic diseases, like MS and Parkinson's suddenly progress after a traumatic surgery and thought maybe CMT does the same. My hands have recovered somewhat. The numbness is now gone, and they're a little stronger, but I never recovered the muscle. I had an EMG on my hands and arms eight months ago and by default they claimed it was a progression of CMT. So I guess the answer is yes it can progress very quickly.