Charcot Marie Tooth Disease

[livingwith]

I am 37 years old and diagnosed with CMT 1A 4 years ago, after continuous ankle/foot injuries and deformities. It has been progressing faster than I ever expected (not decades as typical). My feet bilaterally are extremely pes cavus deformed with hammering of my toes. It is most recently seriously affecting my upper extremeties causing my hand to periodically stay in a clenched position on the pinky side. What really has me wondering now is my feet are almost in a fixed state ie. tendons locked ...Read the full article

[cookie4020]

Hi, everyone calls me Cookie. I'm 56 yrs old & have known I had cmt for about 30 yrs. is the last 15 yrs my feet have gotten much worse. I got very lucky tho when I got an excelent doctor at kaiser hospital. he operated on toes on left foot last nov., right foot this august. he removed the knuckle of each toe. the big toes now have a screw in them to keep them straight. he had to do some shaping of the bones to fit them back together & I wore pins that stuck out of my toes for a few weeks. the overall result is great!!! I was literally walking on the ends of my toes before this. they are all a little shorter now & they aren't so pretty (they never were) but compared to the way they were they are pretty straight. I have had a big problem with deep callus buildup in spots on the bottom of my feet for years. I had to have them cut or (one dr. used a drimmel) every 6 weeks or so for several yrs. since this surgery the callouses aren't quite as bad. they were very painful, causing a constant burning. My latest symptom that has gotten very much worse is muscle cramps. I have had the ones in my calfs since childhood but now I'm having terrible ones that go all the way up to my groin. I plan on talking to my dr about this. I think you might try finding a dr who wouold consider doing surgery on your feet. I have had 2 shoulder surgeries for torn rotator cuffs & compared to that, foot surgery is a 'piece of cake'. the end results have been well worth it. I think my balance has improved but only slightly as I am learning to walk on my whole feet, instead of the foot & ends of toes. here's hoping we can both get more relief from this disease. I feel bad because my children have it & now I see it in 2 of my grandkids. hopefully they will know more in later years. good luck to you & I will put you in my prayers.
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