Breathing - I really need advice and help

[Guest guest]

I had another " episode " They don't know what to call

it really. I have heard them refer to it as an asthma

exacerbation but they don't really know what it is.

These are the facts so far. My peroneal nerves aren't

working properly but haven't demyelineted enough to be

considered CMT type 1. I was then told I had CMT type

II subtype C. Because none of the 4 neurologists feel

that all of the pieces are together they have given me

the diagnosis and taken it away 4 times.

Fact: My swallowing mechanism is now delayed. I do not

yet aspirate but it is delayed.

Fact. My diaphram isn't working properly. My spirometry

in Cleveland proved that when I lay flat I don't

breathe as well. I then went for a sleep study and

found out that my oxygen sats drop to 83 because my

breathing would be so shallow. I never go into REM

sleep. Never past stage 1.

I am so frustrated because I just got out of the

hospital. I get so sick, I can't fight a simple cold! I

follow what the pulmo docs said to do. I took 2 weeks

of antibiotics and steroids only to get worse and

sick. I was told to go to the ER. The new pulmo begged

me. I finally said OK and went in. They kept me in the

ER for 6 hours and gave me a breathing treatment. They

checked my labs, the new pulmo doctor never came down

to see me. She never saw how bad I get. The ER doc

tried to keep me but they refused to admit and

discharged me.

On the way home my breathing became more shallow. I am

sure the exhaustion of the day and frustration didn't

help. My husband took me to a hospital closer to home

and they did decide to admit me. I was in for 6

days,nearly 7. The pulmo docs there chastised me

for being in the hospital. They didnt feel I was

really critical enough. They doctor who admitted me

did. Also the pulmo docs want me to refer this problem

to the neuro docs, the neuro docs tell me it's a

pulmo's problem and I am left here in the middle. Me

and my family. My husband did, for the first time,

stand up for me though. He couldn't believe how badly

the pulmonary staff treated me, it had never happened

before. The doctor acknowledged that I had a neuro

muscular problem but in the same breath said I was

causing this to happen to myself.

I follow the rules, take the meds, I have never had

this problem before. I have only lived near Memphis

for a year.

I realize this is a long letter, If you have gotten

this far I thank you. I really need help though. I am

scared now that I will decide not to go to the

hospital and just stop breathing.

If anyone has an Idea I am willing to listen

Thank you kindly

Lenore