Prognosis Negative

General General CMT Discussion
1

I just recently visited another doctor for yet another nerve conduction study. This one was of my hands. I have lost a lot of muscle mass and I was told that an operation would only cause more neuropathy. My back is inoperable and now my hands. They are so weak and shaky. I think I have hit an impass that really made me realize how crippled I am and wonder what is to come. My legs are pretty weak along with my feet. I have lost so much sensation dealing with bladder and bowel control.I am living in a hot climate and have been suffering with profuse sweating of my head and neck. The neurologist informed me that the nerve conduction to the area of temperature control are being weakened and aren’t functioning correctly. Even in A/C I continue to perspire. It is like a furnace in my head.
I am sorry to be so negative,but this visit had me crying in the doctor’s office. I am not writing for pity. I just wanted to let others know that you aren’t alone in this. I will never give up and I will continue to dance and use weights to keep me strong. Thanks for listening to me. I knew all of you would understand. I hate CMT,but we can’t give in to it. Stay strong,laugh often and know we are here to listen.

Wishing you more good days than bad! Karen

2

I know what you mean. I also have sweating problem and hand problem!

3

I wonder how many others are bothered by sweating problems?

4

Same here, never used to sweat like this and my hands use to be able to do very intricate work.

5

I was standing outside in 25° weather and started ripping off my gloves, hat and coat, because I felt like i was on fire and sweat was pouring off me. The people around me just stopped and starred.

This is one of those things that doctors think you are embellishing and chalk up to the “change”- looking no further. People laugh, sometimes we do too…
But really…Not funny to us.

6

Horrible isn’t it! I have spent most of my summer in Kansas in my apartment . I can’t take the heat or the embarrassment of being drenched in sweat. We are talking about full head and neck soaking wet in the middle of Walmart. Hate it! I also recently got told that my right hand cannot be repaired as there isn’t enough muscle mass left. You have to be strong to endure all the twists and turns CMT delivers. I feel the crippling part sneaking up on me little by little. Be strong and have faith. Karen