RE: so how do we get Drs. to learn?

[Guest guest]

CMTUS (AT) e skriver:

> Maybe we should all put out a book on

>CMT, you know, something like 'This Is My CMT', everyone of us could

>write a few pages,

Yes, a very good idea.

There is some words severel doctors have said to me and about my children

which I´m soooo tired to hear; " Well this disease gives so slight

symptoms. There is nothing to worry about " . And here I am with daily pain

in arms and legs, exhausted after my parttime work, with a low income,

with one kid who do everything in such slow tempo that he almost can´t fix

to go to an ordinary school and one kid who has daily symptoms from a CMT

effected autonomic nevous system.

Of course there are many diseases which usually are worse than CMT, but

for many of us CMT means so much for our lives that we don´t wont our

doctors to neglect our symptoms don´t we?

Rose

[Guest guest]

I too have found that alot of doctors know nothing about CMT. I once argued

with a doctor that a problem I was having was related to CMT. He replied,

" What is CMT " ? He related it to something else, guess he would since he

never heard of the disease.

Re: Digest Number 247

>

> >Welcome Jeannine,

> >You sound like you have my exact symptoms. I have the same problems

> >swallowing....I always pretty much related it to the surgeries I

> >had....but the more I learn from the list I am beginning to really think

> >differently. I have the times too(often) when I can't quite seem to

> >swallow my own saliva and often start to choke. When I had both my

> >surgeries they went in thru my throat and from what I was told placed my

> >vocal cords to one side and went in to do fusion. I had a herniated

> >disk. This kind of scares me as to what I have to look forward to.

> >Thanks for writing about this.

> >Cathy

> >

> >

> I have the same problems with my CMT. Its not common, or as

your

> Dr. seems to think, MILD case of CMT? My neurologist says my CMT is

taking

> a rare course, I have Bulbar Palsy with it. My throat is atrophied and my

> neck and right shoulder also. I have a cold now and nearly choke to death

> when I cough, (phlegm). With this cold its affected my breathing, I

cannot

> take any deep breaths, only shallow ones. I cough and then my atrophied

> throat spasms and I cannot breath. Very scary last few days for me. I

hope

> to get into see my Dr. in the morning. the more I hear from CMTer's

around

> the world the more I'm convinced The Medical Profession is in the dark

> regarding the symptoms of CMT. They are still using the old standard set

of

> symptoms, I have heard that CMT is getting worse with each generation, the

> Dr's need to do more surveys, research on symptoms of CMTer's as we all

KNOW

> there is really no set in cement symptoms for each type of CMT. It seems

to

> be crossing the lines of what type has what symptom. Such as type 1 or 2

> doesn't have such and such symptom with it when we know it does and can

have

> those symptoms. We are proof of that. I wish the Medical Professional's

> would wake up and take a stand for CMT! Instead of sticking their heads

in

> the sand and and writing us off as Oh Well there is no cure and there is

> nothing to be done about it. Sorry guess its my day to complain and

squawk

> about our great Medical care available to us. >Becky M.

>

> ------------------------------------------------------------------------

> Whatever you want, chances are you'll find it at one of the hundreds

> of sites in The PointClick Network--like Disney.com, eCost.com,

> FogDog.com and many more. You get paid as you shop and an additional

> 10% off any purchase, anytime.

> http://click.egroups.com/1/2994/7/_/616793/_/955906332/

> ------------------------------------------------------------------------

>

>