Sleep Apnea and sleep study results I have a question

[Guest guest]

Hello

I just had a sleep study and the results were 8 obstructive apnea events

and 43 hypoapnea events. My O2 dropped to 78 during REM sleep.

I have an appt with a Neurologist on 3-20-08 to discuss the results.

I think I would feel better if the Neurologist had a specialty in CMT

Looking over the files I see posts in 2002 and 2005 and wondered how

those with breathing issues have coped with this twist in the CMT list

of symptoms.

I just returned from China and adopted our 2nd daughter and doing so

probably saved my life as I had breathing problems there due to stress

and exertion that I would have justed ignored if at home

I would welcome any info regarding this situation. (Physician

recommendations, course of treatment, life expectancy).

I live in NE Ohio and have 5 daughters (2 of them age 9 and 16 have

CMT1A as well.

Thank You

Tammy

[Guest guest]

Hi Tammy:

I too had breathing problems upon exertion. The sleep apnea test that I had done

indicated that I had a mild case of sleep apnea, nothing that would warrant a

CPAP device. I also had a CT Scan of my lungs. My pulmonary function was not

causing me to have a shortness of breath.

I also have coronary artery disease, but tests done on my heart also proved not

to be the cause of shortness of breath.

I then had NCV (nerve conduction velocity) testing done on my phrenic nerve.

This was from a previous post on a few years back. The results indicated

that my phrenic nerve was involved with CMT which caused my diaphragm not too

function properly. I was quite afraid at the time.

However, I was prescribed to use a CPAP device when sleeping at night. What a

fantastic device. I can now exert myself again to some degree. I live in Port

Elgin, Ontario in Canada. It is located on the southern shores of Lake Huron. We

just got dumped on with snow just like you did these past few days. I need to

use a snow blower as I cannot shovel snow for any great length of time. That

type of motion does indeed leave me short of breath after about 5 - 10 minutes.

That's why snow blowers were invented. I can handle a snow blower for hours if

need be.

I hope this may be of help/interest to you.

Regards,

[Guest guest]

Hello Tammy, and Everyone!

I Have CMT 1-A. I do have have severe breathing problems. It does upset me

that the CMT sites don't talk more about the breathing issues. I feel if they

were more " aware " and explained the issues...more CMT'ers could be helped, and

we could receive more funding for research.

Kay

[Guest guest]

Hi Kay,

My son is 15 with CMT 1A, he has breathing problems but the doctor can't figure

out why. He has been to the pulmonologist who put him on asthma med. that

didn't work. We have been to the cardiologist, he wore a holter monitor twice

it showed some runs of tachycardia but according to them it is nothing to worry

about. I don't think it is his heart, he just can't seem to take a deep

breathe. Here is an article that mentions CMT and breathing: Rehabilitation

Management of Neuromuscular Disease

http://www.emedicine.com/pmr/TOPIC233.HTM#section~pictures

[Guest guest]

Hello ,

Thank you for the information. I use a Bi-Pap at night and do breathing

exercises during the day. I started playing the " Didgeridoo " to also help

with my breathing. If I drink anything with carbonation in it, or get MSN

in my food... I start feeling like I am suffocating. It is very scary!

I think it was who just wrote, " I then had NCV (nerve conduction

velocity) testing done on my Phrenic nerve. This was from a previous post on

a few years back. The results indicated that my Phrenic nerve was

involved with CMT which caused my diaphragm not too function properly. I was

quite afraid at the time. " ... That might also be a good test for your son?

Thank you again for your post.

Kay ~ Beautiful Oregon Coast