Hi im Trish and CMT is in my biological family i was fostered long term and do not know much about my history.
I have appointment tomorrow/today with genetics and i am quiet nervous however i need an answer to why i have so much pain at 38.....so at last after tomorrow i can stop wondering if i have it or not
Hi Trish. I'm not sure what your question is, but if you have not yet been properly diagnosed with CMT, then the first thing is to have a genetic blood test done to see if you have it. Also, when you see the genetic counsellor, you should mention any symptoms that you have that are on the CMT 'check list' - high arches, no or minimal reflexes, etc. Not everyone with CMT has high arches, though, but it is one of the indicators. I hope it goes well today. Dawn x
Hi Trish, hope it goes well! The results from my genetic test took months to come back, I think if they know the family history they know where to look for the sign but when they have to look from scratch its a long process. Dawn's right though, tell them all about your condition. The pain sounds awful. Good luck! x
I hope that you get the answer that you need.
If you have pain due to the nerves being damaged there are medications for that. Neurontin and Lyrica are two of them.
No matter what the pain is caused by there should be something the doctor can do.
Hi Trish, CMT is not a death sentence and how you cope with it, if you have it - is all psychological.
You didn't say what pain you have, so I'll assume its nerve pain and I'll assume it's in the feet.
It was my 48th birthday when my back went out. It was okay after one month but still tender. My son got sick 8 months later and was hospitalised and there diagnosed with CMT. The Neurologist said he got it from me, but I didn't believe him. 3 months after he got released from hospital I got nerve pain in my feet which led to diagnosis.
Life has changed for me. I had to give up work as my whole body was affected. Your whole way of thinking has to change - I'm still working on that.
I hope everything works out for you.
You are not alone
Hi my feet ankles and legs always were an issues then my back but put it down to working infact put it all down to working as i was in a kitchen....
When i left kitchens i started doing some teaching and compuuter work and then my hands were affected aswell..its amazing how quickly it has progressed in the last couple years but i am blaming my weight for that....my first quest is to loose the weight think positive and stay me.....
Ok so its practically official only waiting on bloods to confirm whether its 1a or 1b. Was told if i dont loose weight ill be in a wheelchair by 40 or at latest 45 im only 38....so today is yhe start of a new chapter im going to take the day to work out a daily plan including excercise diet and sleep.....this is what i have not who i am.....
Hi Trish, It's very surprising how this thing operates. It spends the first 10 years of your life deforming your feet. It then lays dormant for 28 years when you hurt yourself badly - I broke my leg. Then it slowly sets in affecting balance and movement - I put mine down to my leg and working night duty. Then my back went out - blamed my iob of nursing - nerve pain started in my feet - led to diagnosis
Now - I can't nurse. My mobility is affected. I have poor balance and need to use a walking stick for balance and support. I always thought my CMT feet were unique as no one else had feet like mine. Little did I know it was the sign of a neurological disease. I have weakness in my arms and back. I get frequent back pain. My lower legs have lost muscle tone and have the CMT classic - champagne flute look. My upper legs look like they have been hit by a tennis racquet as muscle is lost and fat remains - waffle look is not in at the moment. I need to lose weight. I was overweight before due to night duty but now medication - Lyrica - and being not as active as before has increased the weight. I need an exercise plan for me. I get breathless due to CMT. I need to see my doctor and physio I suppose . Think positive and embrace CMT. Hard to do but essential. Stay happy
It doesnt bother me that others dont understand but my husband still thinks im lazy im going to put together a symptoms ans effect project for him to see can i explain it better
Hi Trish, I also don't mind if strangers don't understand. They don't know the disease. However, my husband doesn't want to know anything regarding CMT or the difficulties I face in everyday life. I don't look sick , therefore my family forgets I have a disability. I have CMT type 2 that mainly affects the lower limbs. It will affect upper limbs, just not as much. It's so annoying, I mention any difficulty and he shuts down. Even my eldest son ignores me. It's like they regard me as a silly, old woman who's lost her brain. It's upsetting and insulting. They need reminding who I am. I am a wife, mother and a woman.
Maybe you could get him to go to the doctor with you next time you go, and let the doctor explain how CMT effects you. Maybe he is afraid that if he accepts that you have this disease it will make it real and he does not want to believe it because it scares him. He may be afraid of loosing you to CMT.
Do Nordic Walking Poles help for CMT drop foot?
How can you diagnose CMT ?
I am in late 40s, diagnosed with cmt, but I getting forgetting a lot and loss of concentration. Can anybody tell me the worst to come? 
Pip 