CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD

Posted by GreenGrandma @greengrandma, Feb 4, 2012

It started out w restless leg syndrome, then my feet started burning as I sat at my desk @ work. It got so intense that I could not be in sitting position 5 minutes. Finally had to go to bed 24/7 for 2 years except to pee about 8 times a day. I do not suggest that you do that as your muscles can atrophy. I could still walk but I lost my fluidity of motion, nothing has brought that back. I prayed daily to die, because of God, I never tried to take my life. I now go to a pain therapist. It took about 11 years, to diagnose CMT. (5 yrs. ago) I have gone through hell and back. Physical therapies, paralysis, foot deformities, 11 corrective surgeries but Life is worth living after all. Hope 2 Help!

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Colleen Young, Connect Director | @colleenyoung | Apr 9, 2022

In reply to @leonaruehmann "My Daughter was diagnosed with the same at 6 years old" + (show)

How old is your daughter now, @leonaruehmann ? How is she doing?

leonaruehmann | @leonaruehmann | Apr 9, 2022

In reply to @colleenyoung "How old is your daughter now, @leonaruehmann ? How is she doing?" + (show)

She is 25

Colleen Young, Connect Director | @colleenyoung | Apr 12, 2022

In reply to @leonaruehmann "She is 25" + (show)

How is she doing now?

cosynook | @cosynook | Feb 24 1:40pm

My 6’10” adult son is experiencing similar symptoms. He’s gone to several doc with mention of Cavus foot and Charcot Marie Tooth disease but there’s been no formal referrals. I live in Cleveland area and want to find someone there. Seems like two special areas are involved… should we go first to a neurologist or orthopedic. Thanks for any input you can provide