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loki2012 10-27-2012 04:06 PM

Anyone with CMT?
 
CMT anyone else? How bad is yours? I have a mild form of CMT and its a pain in the butt! I hate it!

chaines 12-06-2012 02:07 PM

Re: Anyone with CMT?
 
Do you have a cavis (high arch) foot? I was diagnosed with CMT awhile back and that was the neurologist's only reason for the diagnosis. Everyone in my family has high arches but no nerve pain. My sudden onset pain has been severe and life changing over the past 20 months.

loki2012 12-18-2012 05:59 PM

Re: Anyone with CMT?
 
[QUOTE=chaines;5100330]Do you have a cavis (high arch) foot? I was diagnosed with CMT awhile back and that was the neurologist's only reason for the diagnosis. Everyone in my family has high arches but no nerve pain. My sudden onset pain has been severe and life changing over the past 20 months.[/QUOTE]

No I dont, I barely have any archs. I was diagnosed when I was 12yrs old and I am 35 now. I have been lucky to have not become severly disabled by CMT.

poeyou 12-20-2012 09:53 AM

Re: Anyone with CMT?
 
My son has CMT1a..he has all the problems that come along with it.. high arch. foot drop.. he watches his weight carefully and exercises to keep problems at bay.

loki2012 01-17-2013 02:05 PM

Re: Anyone with CMT?
 
I have to watch my weight too. My dr told me if I ever became to over weight that my legs would give out and I'd be in a wheel chair. My weight fluciates bc I can't exercise much. I'm currently at 194, my biggest but I'm trying to lose 60 pounds. My official diagnoses is scapulaperoneal syndrome.

chaines 06-13-2013 01:58 PM

Re: Anyone with CMT?
 
[QUOTE=loki2012;5118841]I have to watch my weight too. My dr told me if I ever became to over weight that my legs would give out and I'd be in a wheel chair. My weight fluciates bc I can't exercise much. I'm currently at 194, my biggest but I'm trying to lose 60 pounds. My official diagnoses is scapulaperoneal syndrome.[/QUOTE]

Hi Loki2012,

I was a very athletic 210 pound guy before my disease changed that. I probably lost 20 pounds of muscle over the past two years from being almost totally sedentary. At the same time gaining 45 pounds of fat. Just two months ago I came across a book called Eat to Live. Read it. Seemed to be totally logical so I gave the authors nutritional model a try.

Basically, I only eat,
-Fruit
-Vegtables
-Nuts
-Seeds
-Beans
-Salmon once a week

I cut out processed foods, most meat and animal products, DAIRY and salt(which I miss very much).

Two months after eating this way and I feel like a new man. I'm down to 185Lbs! I am not able to exercise either so all of that weight was from my changed diet. My mind is so much more clear now. I have been reading like crazy. I'm taking 900mg a day of gabapentin, down from 3600mg. 500mg of tegratol, down from 800mg. My neurologist is stoked and even gave me a high five.

I think I originally found out about that book from healthboards.com and I'm glad I did.

Eating this way takes commitment but I'm looking at the food is part of my treatment. After awhile it starts to taste really good and eating any junk food will make you feel awful.

Best of luck on your journey...


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