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Charcot-Marie-Tooth Disease by Anonymous

Julie Gardener

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Charcot-Marie-Tooth Disease by Anonymous​

I read a story on your website asking about other people with Charcot-Marie-Tooth Disease. I am a 39-year-old male from California. I got CMT when I was 24 years old. It has some very frustrating effects. Adjusting to walking with half the muscles you had below the knees can be pretty dangerous. On three occasions I hyper-extended my toes all the way back to my shin, leaving my entire foot and ankle area black and swollen for 6 weeks each time. I also have arthritis in my upper and lower back. This adds to the difficulty in walking. Basically, every step I take has to be looked at and planned out or I will twist my ankle and fall. Smoking marihuana not only allows me to look up once in a while, but enhanced eye-hand mobility allows me to participate in hobbies and type on my computer or button my shirt without using hemostats. But if I get caught with a couple of ounces of pot in my house they will go to my kitchen and get the baggies, then go to my home office and get the postal scale, and I will be going to jail as a drug dealer. I am retired and have HMO coverage. They give me Motrin which burns holes in my stomach (and it's expensive) and Vicodin, which sends me on wild 6-hour acid trips (and it's expensive). I took the "FREE MEDICINE" route and live in terror of being arrested for being sick.

Source: Comments and Observations
 
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