Charcot Marie Tooth Disease

[DavidOne]

My father is 74 yrs. old and has CMT From the information I have read this disease appears to effect the feet and lower legs, before other signs become present. My problem started about six and half years ago, where I had like an electrical feeling in my right hand, at first mild not much if any pain. After about a year this became present in my left hand with about the same, at times alittle more intense pain. At the end of the second year this electrical feeling had moved all the way up my arms and the intenses of the shocking was mild to moderate with occasional severe pain like I'd put my hands into an electrical outlet. This situation now entails both hands, arms, and shoulders, with the shocking going from moderate to severe in pain. I have been to alot of doctors. No answers. I've had little to no problems with my legs or feet. I'm hoping maybe someone, somewhere may have a clue. This problem has taken over my life and often feel hope is gone. If anyone may have some direction which I could find help in, Thank You for your input.

[cookie4020]

hi,
CMT does affect the arms & hands as well as the legs & feet. It sound like you have some of the beginning symptoms. massaging may help but I think exercise, mild at first will help. I use 1 lb weights & just lift them over my head with my elbow bent outward. both of my rotator cuffs are torn so I can't do alot of things but any exercise really does seem to help. in fact I can see the result of exercise in my arms in a short time also in my legs if I swim. that's about all I can do with my legs except for exercises sitting or lying. Lack of exercise begins to show within a week of stopping. you can fight this S_ _ T but it takes determination.
But hey if I an old gal like me can make it I'm sure you can :)
cookie

[EZgoing]

There are some sub-types of CMT that are well known to start in the hands/arms vs. the feet/legs that is usually expected by most doctors (even most neurologists).

I hope that by this point, you have found a neurologist that actually knows CMT and has offered some help. There are a few medications that are helpful to many of us. Gabapentin (Neurontin) or Lyrica offer help for neuropathic pain (which is what you are experiencing) as well as a few others.

If you or anyone reading this has not found any help with this issue, try going to the MDA's web site to find your local MDA clinic. They will be able to offer the name of some doctors that specialize in this.

Another option is checking out the CMTA's web site. They maintain a list of CMT specialists all across the country.

There IS help out there.. we just have to learn all that we can to help ourselves. We NEED to be our own medical advocates (like it or not).

I'm a firm believer in that Knowledge IS Power.

The more we know and understand about our CMT, the less there is to fear, and the better we can help ourselves in the process.

Ez

[TaLLan]

You need to be tested for Carpal tunnel entrapment and Ulner entrapment. If that is ruled out have an MRI on your neck to check for herniated disk in the neck. Good Luck to you