Re: breathing difficulties

June 19, 2005

Dawn,

I also have problems breathing when lying flat on my back and

just begun seeing a pulmonologists and am scheduled for a sleep test

in July. I was told that my lungs were too short, that I was not

breathing deep enough, and that I was using only 28% of my lung

capacity. He did mention that some passageways were smaller than

normal, partially due to CMT and heredity.

However, my neurologist, considered to be one of the most

knowledgeable neurologist in South Alabama when it comes to CMT,

wants me to believe that CMT affects only the extremeties: the hands and feet.

--Joe

June 19, 2005

A very good friend is affected with breathing problems and so was her father.

The neurologist in Memphis, Tennessee says it is CMT. These people also went

deaf due to the nerves not working in there ear drums, this too was CMT. So

nerves just in the extremities being the only ones affected just doesn't apear

to be true.

Cathleen in Arkansas

June 20, 2005

Joe,

You might request to have an NVC/EMG phrenic nerve/diaphragm specific

test done if you want to know for a certainty about CMT involvement.

My MDA Neurologist thought the same as yours until after seeing the

results of this test. The test was ordered by my internist, who upon

my request, " educated " the neurologist. I was the first in his

experience to have CMT-related breathing problems, but he now is aware that it

is indeed a possible ramification of this disorder.

My diaphragm is elevated as well and my diaphragm muscle is operating

at less than 20%. My breathing is shallow but is getting the job done. My trunk

has always been relatively strong and other chest muscles have pitched in to

help with the breathing. My breathing seems to have improved since I have

consciously been conserving energy by using a scooter and not rushing with any

of my daily tasks. The lying flat breathing has improved as well.

The NVC was not painful, the EMG was only 3 needle sticks. Not too bad to put

the " wondering " to rest and to " know " what is going on with my body.

It seems to me that this is the time for you to " take charge " if you

want confirmation. Your neurologist is not up to date on CMT issues.

Ruth

September 17, 2007

Hi Everyone,

I have been diagnosed by a pulmonary Dr. with a diaghram (leftside only) that

has muscle weakness and pushes up against my lung and causes numerous problems.

I use a c-pap machine at night, (because my oxygen level in blood drops

considerably when in REM sleep) have recently been DX with asthma, I use to have

trouble breathing when bending over, but that is better due to recently losing

44#.

My pulmonary Dr. did a test to see if my diagram is frozen or was able to still

function, just not as well because of muscle weakness. Thank God at this time I

just have the muscle weakness.

I hope this info helps someone.

Connie

P'burg, OH

September 18, 2007

Hi to all,

Yes, breathing difficulties are serious for persons with CMT and

should not be overlooked or dismissed by doctors. The phrenic nerve

can be affected, and this in turn can affect breathing. We have some

information in our Files and you may find some of the older

articles on the subject at

http://lindacrabtree.com/cmtnews/breathing/breathingsubtitles.html

~ Gretchen

January 29, 2009

Big hug to you Carolyn and many prayers. I developed an allegergic reaction to

nuts about 7 years ago( before CML) and it causes my throat to swell. I carry

benadryl with me always . Very scary but as you said you have come too far over

too many hurdles to let an allergic reaction beat you. Hold on girlfriend-

compared to CML this is the minor league. They may have you carry an epi pen or

give you shots ;prevention is key if you know your trigger. But they will

figure it out pretty fast and help youmanage the condition....if it is an

allergic reaction. But I would make sure that dx is accurate.

Chi

From: carolyn_kuptz2000 <carolyn_kuptz2000@...>

Subject: [ ] breathing difficulties

Date: Thursday, January 29, 2009, 7:18 AM

Dear Group,

I have had two very scary episodes in the past week. My esopugus has

had a spasm closing off my airway. It involved one trip to the er.

I have been to the GI dr. He doesn't want to look down the throat for

fear it would trigger another spasm. He is sending me to a allergist

tomorrow thinking it was a allergic reaction. The only thing new was I

was on penicillin for 8 days because of a bad tooth. Very scary not

being able to get air in. Has anyone had a sensation like this. They

said I must have been getting some air or I would have passed out. I

am beating CML, beat liver function failure due to Gleevec, I am not

ready to check out because of an allergic reaction. I am very teary

today, sometimes it just gets to you. I need to give it over to the

Lord and I have. I am in His hands.

Carolyn_kuptz2000@ .com

dx 11-05

January 29, 2009

Dear Carolyn,

I am sorry to hear of your rough week. I would go to web md to see if the

antibotic they gave you may have this scary side effect. This antibotic may

have clashed with the cancer meds. I don't know but if you arm yourself with

information when you speak to the doctors your have something to work with.

Also I would try to track your food intake during the past few days our bodies

are ever changing. So when we go to a new doctor they ask all these repetious

questions but sometimes there are benefits if there is a change. January is a

hard month but as warriors we can pull together. Hope next week is much

brighter.

________________________________

From: carolyn_kuptz2000 <carolyn_kuptz2000@...>

Sent: Thursday, January 29, 2009 10:18:38 AM