1. < Neuropathy

Chronic Sensorimotor Axonal Polyneuropathy and CMTuagnised with Chroni

Posted by mjpm2406 @mjpm2406, Aug 31 6:45am

Anyone diagnosed with Chronic Sensorimotor Axonal Polyneuropathy and CMT2 and CMT4B? CMT is a hereditary disease that comes down on the X-chromosome. My mother’s side of the family had at least 5 generations with CMT. I was recently diagnosed with CMT2 and CMT4B along with two of my daughters at Weill Cornell Hospital in Manhattan after undergoing a whole exome sequencing test. I was diagnosed with Chronic Sensorimotor Axonal Polyneuropathy six years ago. Last week I underwent a EMG study that indicated I have no recordable sensations in my feet and legs. Walking is difficult and my balance is awful. No cure and no treatment so this sucker is going to continue to progress.

Interested in more discussions like this? Go to the Neuropathy Support Group.

celia16 | @celia16 | Aug 31 7:13am

I’m not familiar with this condition. It sounds like you’ve gotten a lot of information about it. Did you have symptoms growing up or was it only 6 years ago?

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Aug 31 7:53am

I'm hoping others might be able to share some experience with you and anything they've found helpful. I don't have the same condition but do have walking and balance issues with my neuropathy. I did run across a Feb 2023 research article that might be helpful if you haven't already seen it.

-- Recent advances in the treatment of Charcot-Marie-Tooth neuropathies
https://onlinelibrary.wiley.com/doi/10.1111/jns.12539

REPLY
mjpm2406 | @mjpm2406 | Aug 31 9:10pm
In reply to @celia16 "I’m not familiar with this condition. It sounds like you’ve gotten a lot of information about..." + (show)
@celia16

I’m not familiar with this condition. It sounds like you’ve gotten a lot of information about it. Did you have symptoms growing up or was it only 6 years ago?

Jump to this post

I grew up with CMT because my grandmother, mother, uncles, and older brothers suffered from this disease. The main symptom is loss of sensation in the feet and lower extremities. My symptoms started when I turned 60. My oldest daughter started at 45. My younger daughter is now 49 and has not developed any symptoms yet. The Chronic Sensorimotor Axonal Polyneuropathy is an acquired disease. I started experiencing MS like symptoms at age 62. I have no sensation in my feet, legs, hands and arms. When it reaches my core it will attack my organs. I am also a SMA and GAN carrier. Fortunately, my children did not inherit the SMA and GAN gene mutations from me do those gene mutations will die with me. I also have three different blood cancers MDS/ MPN/MF plus Polycythemia Vera. I caught the blood cancers because I was in the Marine Corps. I was at Camp LeJeune and I was exposed to contaminated water and I served in Vietnam for 16 months and I was exposed to Agent Orange. It’s been fun.

REPLY
Please sign in or register to post a reply.