Replies to I also was diagnosed with hereditary axonal polyneuropathy. During the EMG the doctor noted that the...

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Neuropathy | Last Active: Jul 12 7:37am | Replies (5)

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@jawillia27

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!

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Replies to "I also was diagnosed with hereditary axonal polyneuropathy. During the EMG the doctor noted that the..."

John, Volunteer Mentor | @johnbishop | Jul 12 7:37am

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?

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