CMT is life threatening

[Guest guest]

I thought I should write because I saw the comment which was made in reference

to MDA and this CMT person was glad that they had CMT and not Muscular Dystrophy

because it was not life threatening. My neurologist had told me to get my

affairs in order because my neuropathy is so severe. The reason for my severe

neuropathy was unknown until a MDA neurologist diagnosed me as having CMT this

year.

This severity of my CMT is comparable to what? Many who have CMT have a

more severe case than I. I keep a positive mind and continue to function in

everyday life even if I am not able to physically work because my hands, feet,

legs, and my mind no longer work in the way I need them. However I do not give

up, I continue trying to work from home. I have to say that CMT is life

threatening- I choke often and have trouble breathing. Breathing is essential

and without it we die. I have faced the reality of my disease and have the

medical advice on how to deal with it. If I did not follow the advice then I

would be gone by now.

More is discover each day about CMT. Nothing is written is stone. All of

us have varying symptoms. I will stay aware of what is happening with my body

and seek the help I need for particular problems. But if I ignore my problems

with choking and breathing then I am placing myself in harms way. I know it is

frightening to look at the negative aspects of CMT but we must face them in

order to overcome them. I have found that I understand my body more than most of

the doctors do so I try to monitor what is happening within while keeping a

positive attitude. We must keep aware of what is happening to our bodies and

realize CMT can be life threatening. In this way we can face the future with

better knowledge of what we need to do to control our circumstances with the

CMT. I know the literature says that CMT is not life threatening. Do others

also think this is a life threatening disease?