Breathing Problems

[Guest guest]

; CM here!

I do have a very simular problem. Allergens really

send me reeling. . . mold, dust,pollen and chemicals

in bathroom cleaners etc.. . Once my bronchials are

inflamed and irritated(and I'm hyper-sensative so the

slightest thing can do this)it takes forever to clear

it up. I have what my doctor calls " night time

asthma " . He says its acid reflux (causing irritation

to airways). . . causes breathing stress, the chest

pain and sometimes even arm numbness and pain like a

heart attack. I have auto-immune trouble due to CMT

and it causes me to over produce the normal secretions

to take care of the allergens which causes irritation

to the air passages (post nasal drip) and it sets me

up on a cycle of phlegm and unable to clear with my

weak cough. So, I get asthma attacks of air passages

just shutting down or being blocked. I even lose my

voice at times like the vocals are being affected as

well. Mine feels (frozen) like I have ran really hard

and sucked allot of cold winter air in. That sensation

never leaves my broncials unless I'm sucking on a

cough drop, which I go through several packages a week

or I constantly have a dry cough which irritates air

ways even more. He has me on a trial period of

anti-acid meds to take at night, and a nose spray to

reduce but not dry completely the secreations or

drainage. It does seem like it has helped my

bronchials not to be as irritated and I haven't had

breathing attack since starting them ,but I think with

the healing process being slow due to CMT it will take

a while to know a considerable change! I have always

had a bronchial weakness, and my son how also has been

diagnosed with CMT1X has had it (bronchial asthma)

from birth. We both have a tendency to " dry

bronchitus " . I tend to disagree it isn't CMT, it is

possible in some people to have a bronchial weakness

due to nerve conduction either slowed or shorting out.

CMT itself doesn't cause these things but it can

become a complication due to the CMT. I have had

complete pulmonary function test (through MDA

clinic)and it came back " normal " . My GP tells me most

likely its on the low end of normal ( which he has

ordered the test results , so he can look at them and

see where on the normal range I fall) so therefore for

CMT complications can cause distress. So, I do relate

to your trouble. . I haven't found anything to

completley relieve it and by the way the worst of it

began when we lived on a dirt road on a curve where we

got dust blown constant from both ways when cars

passed. We lived near a lake so lots of traffic even

though a dirt road. I used to jog or run for exercise

and I would vbreath deep while running and I think I

over loaded my body with dust and other allergend by

regularly running the dirt road and breathing deeper

than normal breathing allowing my body to be

overwhelmed and caused the allergy. I would have

sneezing fits for days after running and end up with

pluracy from it so I finally quit running. Ever since

then I have a constant irritation . . I due think its

CMT weakness that does't allow me to completely get

over it. Our CMT bodies heal slower and sometimes

never get back to " normal " for we don't have the

ability to regenerate damaged cells and tissue. So,

once damge has occurred you may or may not get back to

your normal function. I have just learned to live with

the limits I have. . . I have been singing for CMT

awareness on a weekly basis at a local restaurant, and

I've had to stop completely for last two months now. I

haven't even been able to sing for my own pleasure for

about three weeks. I began to think I'd lost the

ability totally to ever do it agian, but slowly I'm

building back and will go at it slow if I go back to

awareness singing. (instead of 3 hrs a night I will

cut to an hour and maybe ever other week)Keep us

posted how you are doing and what your doctor finds. .

and I'll do the same. . for through the sharing of

experiences and information we can help others on the

road to coping.

HUUUGGGGGSSSS! ~~Libby in Arkansas

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*-* TODAY IS A " GIFT " . . TOMORROW IS NOT A PROMISE. . . MAKE THE MOST OF THE

" PRESENT " ! *-* LIBBY FROM ARKANSAS

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[Guest guest]

Marti,

I agree we need to be careful not to attach all that ails us to CMT, but I

have found numerous sites which include phrenic nerve and diaphragmatic

paralization as symptoms of CMT Type II C. I've actually been doing some

research as of late because I discovered that my left vocal chords are

paralyzed. I still speak relatively well, but when I overdue it, I get

hoarse. An E.N.T. discovered the problem, but I'm still kind of in the

middle of it.

What part of Virginia are you from? I've been in Virginia Beach for about 6

months. I'm on the go quite a bit, but to date I've never met anyone else

with CMT.

Hey ,

My dogs are barkin'!

Barry

>Hi All: I don't mean to seem unsympathetic, but I think the breathing

>problems with heat are very common - especially for anyone with any

>respiratory problems like asthma or emphysema. I don't think that CMT

>relates much except for the swelling and the fact that the breathing may

>seem harder

for

>us because we often need to exert more energy to get the same effect as

>others without CMT; that extra energy required can make the stifling, hard

to

>breathe air, all the worse. I do agree that when it's 95 degrees or more,

>and the humidity is 95% - it feels absolutely miserable and is quite

>dangerous health wise, for many people. I just moved from St. Louis (some

of

>the most hot and humid weather I thought possible) to Southern Virginia.

So

>far, Southern Virginia (on the Coast) is much more tolerable than the

>sweltering midwest.

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