Re:Breathing Difficulty

[Guest guest]

Joe, This is Dawn. I am a 37 y/o with CMT 1A. Almost every winter or early

spring, I have gotten some type of " temporary bronchitis " , every year! So, I had

a breathing test done and they said there is nothing wrong with my lungs but, I

knew there was. Why it comes on every year but then leaves, I don't know. But,

what you described is what I get during that time. I can NOT lay down

whatsoever or I can't breathe and I have to sleep sitting up!. It lasts about a

week or so then leaves. I am from Buffalo, NY and pretty much lived there all my

life. I am hoping this breathing problem will go away this year because I just

moved to NC, where the winters are milder.

But, I always thought the breathing probleme was related to the CMT as well as

the environment. So, I will see this winter/spring in this milder environment. I

know, it's a horrible feeling and now I don't even have health insurance. I just

started Soc. Sec. Disability in Feb., so have no work-based health insur.

and was told I get too much from that to get NC Medicaid, although, I did have

it for one year, last year in NY.

But, thinking about it, when I applied in NY, I was still working but basically

making less than I ever had and less than I'm getting now and no co. health

insur. I did, however get my son qualified and he has NC Health Choice. I was

told to come back and apply for some " special " Medicaid but I don't remember

what it's called. I guess I should do that in case I have any breathing problems

or other irritations that I need help with. Guess I've written enough for now.

Yes, I can also relate, completely!

Dawn

It's not having what you want, it's wanting what you got.

[Guest guest]

Joe,

I almost forgot to tell you, Advair (50/100?) worked pretty well for me for a

couple of weeks.

Dawn

It's not having what you want, it's wanting what you got.