Charcot Marie Tooth

Posted by embracethebrace17 @embracethebrace17, Jun 6 1:22pm

Hi,
My name is Virginia. I was diagnosed with CMT 1E and I deal with Peripheral Neuropathy every day. I was on gabapentin and recently got taken off because it was causing dizziness and my balance is already affected. I wear bilateral AFOs and try to stay as active as I can. I love being out in nature. Currently on Celebrex and it’s helping my neuropathic pain as well as my back pain. I’m just afraid of getting addicted to any meds. If I can find the same effects from natural remedies, I am all for it.

Looking to connect with fellow CMTers or anyone taking Celebrex. Also want to learn what other people are doing to manage their pain.

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

John, Volunteer Mentor | @johnbishop | Jun 6 4:10pm

Hello Virginia @embracethebrace17, Welcome to Connect. The Foundation for Peripheral Neuropathy has a list of supplements that might be helpful for learning more about what others have found helpful - https://www.foundationforpn.org/vitamins-and-supplements-for-nerve-health/. There are quite a few members who have posted about Celebrex but not sure how many also have Charcot Marie Tooth (CMT). Here's a search of Connect with links to the discussions and comments on Celebrex - https://connect.mayoclinic.org/search/discussions/.

You might find these related discussions on CMT helpful to connect with others.
-- CMT (Charcot-Marie-Tooth Disease) - Genetic Testing
https://connect.mayoclinic.org/discussion/cmt-charcot-marie-tooth-disease/
-- Different types of Charcot-Marie-Tooth disease (CMT)
https://connect.mayoclinic.org/discussion/different-types-of-cmt/
-- Charcot-Marie-Tooth disease: Surgery needed after SFN diagnosis
https://connect.mayoclinic.org/discussion/surgery-needed-after-sfn-diagnosis/
Have you looked into any supplements that might help with your neuropathy symptoms?

amota | @amota | Jun 15 1:24pm

I was prescribed Gabapentin but since my neuropathy pain is minimal, I chose to have an acetaminophen as needed.
I guess the side effects of Gabapentin al worse than the benefits it can provide.

megidigo | @megidigo | Jul 9 9:01am

I have sensorimotor polyneuropathy which has caused me to develop high arches, hammer toes and major muscle loss in feet and calves which has made wander if I have CMT but my diagnosis is sensorimotor polyneuropathy. I believe CMT is hereditary sensory motor neuropathy from what I have read?

I thought my walking issues were originally just due to sensations caused by neuropathy until I noticed my feet had deformed and I was walking on the outside of my feet due to the arches. No doctor or neuro told me this could happen so I found out myself when my right foot started to feel like my left. I also have the wasting of my calves and my arms biceps hurt if I lift them over my head which I found out was common from watching a CMT patient on youtube.

So I dont have CMT but I guess I might as well as from what Ive read all my symptoms seem to be the same. This neuropathy stuff is very confusing and I confuse myself daily as doctors are not of help for me. I also have an afo but its getting harder to walk. I had insoles made but my feet deformed more since. Curious if you have a certain shoe you wear if you have high arches or if anything else helps you with walking other than the afo?

jawillia27 | @jawillia27 | 6 days ago

I also was diagnosed with hereditary axonal polyneuropathy. During the EMG the doctor noted that the nerve reactions indicated CMT type 2. It’s hard to pin down a precise diagnosis but the doctors tell me it doesn’t matter. Treatment is the same. So I attend the CMT clinic at Mass General. And really there is very little “treatment”’available. Mostly PT for balance and to prevent further muscle loss in the lower legs (wasting is by now pretty obvious). Can’t do much for the hammer toes, high arches, and bad foot drop. My feet can’t clear even a bare floor. For safety I wear AFOs for protection. They are full braces running from beneath my feet to below the knee. Not particularly comfortable and hot in the summer but I’ve reached the point where it just isn’t safe to walk without them. It’s also exhausting to have to lift my whole leg to walk. So I’m resigned to this condition and working to slow down the progression. Want to stay mobile as long as possible!

John, Volunteer Mentor | @johnbishop | 6 days ago

In reply to @jawillia27 "I also was diagnosed with hereditary axonal polyneuropathy. During the EMG the doctor noted that the..." + (show)

Hello @jawillia27, I see that you have been a member since 2021 and this is your first post so I just wanted to welcome you to Connect. I don't have CMT but I also have hammertoes, neuropathy and struggle with balance. Walking is difficult for me too. Mostly I think it's due to my forward leaning posture when standing or walking. I've had many PT sessions to work on the posture but the exercise hasn't helped much with the walking. I do think it helps me to stay mobile which at 83 is my daily goal. I find that barefoot type shoes (zero drop soles) help me feel the ground better. If there is too much cushion it adds to my balance problems. The barefoot shoes help with the balance but not so much with the walking as I end up with more pounding on my feet which makes them hurt while walking. I'm probably overdue for getting a rollator type walker but I'm sure it's in my near future.

It's great to hear that you are working on staying mobile as long as possible. Do you do any specific leg exercises to help with the leg strength?