CMT Central

Hello everyone I am FHS a female in her early twenties who has just been diagnosed with CMT in the worst possible way that I can think of, I went in expecting that I had carple tunnel only to find out by a rude obnoxious neuroligist who laughted at some of the things that I had to say that I had cmt, he then went on to give me a complete history of cmt's discovery before telling me I was an interesting case and that most people dont get it untill they are 80, before sending me of to a blood test and then deciding to reperform the electro testing.. to top it all of he then announced like he was doing me a big favour that it wont kill me and how much better it is then having diabetes.. my run since then has not really improved, I have got really close to ending things but the thought of what it would do to my partner has always stopped me, I am so sick of being so anxious all the time and not being able to sleep so i though i would come online and see if there was any chat rooms.. since I haven't found any I thought I would sign in here..

I am so sorry you are feeling so low, i know how that feels, struggled for over twenty years with very bad pain and no real backing from my family, now i have a lovely wife and two great kids. I suppose my point is there is a life to be lead with CMT and it does take some adjustment, but it can be done

Have you spoke to your GP about how you feel, if not it might be an idea. I did not want to speak to anyone about my cmt and how i felt but it got where i had too for my familys sake and now i feel like i am on the road back to happyness.

There are loads of ways to help yourself aswell, read about your condition and learn as much as possible, sounds selfish but you have to put yourself first for a while and get to grips with your condition. If your anything like me, its easy to let peolple take advantage and you can lose your own way a bit.

This site for me has be a god send, i cant tell you how much it has helped my state of mind, just by being able to read though the posts and feel i am no longer alone with this condition has lifted my spirits, with that i feel so much more able to cope.

I truly hope this helps you in some way.

If you want to talk some more please get intouch with me i am around most of the time.

Please try to be strong about this. To be told so abruptly is shocking and to you it obviously was as such a blow as if someone told you, you had cancer.

Firstly you can see another neurologist and request another one if you want to. You are in the driving seat.

Second explore the diagnosis, find out as much as you can about it. It may make you feel better about it.
thirdly keep posting here, you are not alone. We all have the same probs, as you and support each other.

You are lucky you have home support. The shock you will get over with in time. There are many forms of cmt and it sounds as if you have it mildly.

Sure its progressive but slowly as a rule.

Hi FHS, welcome to the forum

Tis late and I am off to bed in a minute so I will respond to your concerns when I am a little more awake in the meantime, take a look through the forum.

There is a great gang of folks here

Hi FHS and welcome

We all suffer from the same thing on here so just let it all out and we will help you. You are not alone.

it would be nice to know more a bit about u and were u r from etc etc

I'm sure she'll tell us when she wants to / is ready to

FHS,

As you can see from the above, and I hope you have been back to see the replies, they are wonderful people in this community. I only came across this site the otherday but felt like I had found a 'home'.

I'm not sure how I would have faced things if my first contact had been a neurologist like that. I have met them but by then I was in enough control to put them right and offer them education if they wanted it.

I believe I have the CMTx thing but thats form my own studies and observations. Although diagnosed about 36 years ago it was about 14 years ago my GP actually told me. He did it my giving a few facts and then some referance for me to 'research' it. I found it so facinating that by the time I understood it was 'ME' I was looking at it only took a couple of depressive days to accept it.
OOOPs I'm gabbling. ok, just wanted to say... CMT is NOT the end of the world. Your introduction to it was pure bunkem! (usually get it at 80!) So please, come her and learn the truth, make friends and introduce your partner.

Good luck

Garth

I love these sorts of threads... they just go to show what a great bunch we have here