Re: Lungs

[Guest guest]

Hello!

I am one of the lurkers. I am Owen. I have CMT 1a I am 63 DXed 1960.

I have read some of the posts here over the years and have posted in the

distant past. I am responding to your post because of my on going

problems and seeking of medical help. I have been seeing a

pulmonologist ( Spelling?) for the last 18 months. I had been

previously DX with asthma, COPD, and emphysema. From smoking, work,

enviroment, and hereditary not do to CMT. How ever after seeing the

pulmonologist and having the results from three lung function test one

from 2001 and the other two last October and yesterday the pulmonologist

has determined form the datd of the tests between 2001 and last October

there was a loss of 50% of my lung function and form last October until

April 10, 2006 there was no change. He is sure it is the CMT causing

the loss of lung function. To say the least I am bumed out.

Happy Trails

Owen

[Guest guest]

Hi Owen:

Did your doctor put you on a CPAP machine to help you sleep at night? Have you

had a sleep apnea test? Would you be able to see a doctor who is an expert in

rehabilitation and electrodiagnostic medicine? These test would show whether

your phrenic nerve is involved in CMT for your diaphragm?

Mine happens to be and it initially showed up as shortness of breath, after we

did all the heart checks and pullmonary function.

Just a thought.

[Guest guest]

Hello ,

No he did not. I actually do not have any problems sleeping. My wife says she

thinks I could almost sleep standing up against a wall. I have had all those

tests and yes there is phrenic nerve involvement. I had mentioned right in the

beginning when I saw the first doctor regarding my breathing that it may be

caused by CMT. (Of course praying it was just some other lung aliment that

could be treated.) The doctors wanted all the data before committing to a

diagnosis. The doctor I am seeing is the head of the critical / intensive care

Lutheran General Hospital which is a acute trauma center for the northwest

metropolitan Chicago area.

Happy Trails

Owen

[Guest guest]

,

My doctor did a flouroscopy to watch diaphragm movement. He said since it

wasnt paralized then the phrenic nerve isnt involved. What is the name of the

tests that you had that checked the phrenic nerve involvement? My pulmonary

function test showed an obstructive lung defect. I see a lung specialist on

the 19th so I should know more. He probably doesn't know about lung

involvement and CMT.

[Guest guest]

Owen,

I don't post much either but your post caught my eye. I have type 1A as well

and I am 37 years old. I used to smoke and did for over 15 years. I used to

have chest pains that the DR could never explain. They tested my heart many

times and many other things. Once I had pneumonia and they gave me puffers to

help out while on antibiotics. The chest pain went away at the same time. I

was amazed.

I quit smoking shortly after that the DR said I had asthma. Oh well just

another thing right, wrong.

I stayed on the puffers for a couple of years. Then I started taking Vit C for

my CMT. After a few months I began to notice that my lungs were filling up more

then they used to. I than began thinking that maybe the lung issue was because

of the CMT. I began to lower my asthma dose and I have stop it all together.

I still keep a stock of them to help out when I am sick. The vit C has helped

alot and I am breathing better then ever before. Many DR's told me CMT would

not affect the lungs but I feel totally the opposite.

Cheers,

[Guest guest]

you're welcome... well, bit the bullet so to speak..(this is the first time in a long time I could not treat myself). saw the dr (the one before the surgeon)... I'm taking cortisone (pill form) for 6 days... along with muscle spasm pill. and have major pain med if needed.. Could not take the pain any longer and nothing I was doing was giving any relief..(and did I take some herbs! everything but the kitchen sink as they say..) I started the cort yesterday... and can already see a difference - pain is mostly tolerable.. had to take a pain pill last nite and this a.m. before this I would sit and cry the pain was so bad...hot/cold, oils,, nothing was working... I'm in therapy now 3 days a week for 2 wks and then go back to see what is next if therapy is not working... The chiro says definitely do the exercises even though the hurt.. They're all on the same page with trying to stretch out the neck...

The dr said the top half of my neck is like a 20 yr old... but the bottom half is like an 80 yr old... bone spurs that probably been building for yrs.. The chiro and dr both are optimistic on the therapy... which makes me happy. I'm using my right hand some but not alot yet... this message is with both hands. Thanking everyone who has kept me in their prayers.. One thing the dr said was people need to be concious of their posture as most people aren't and slump alot.. even when walking people don't throw their shoulders back, hold their head high etc so you young people... watch your posture.. that is one thing that you can do for good health later down the road.carolG <cgiambri@...> wrote: Ran of time yesterday to say thanks for Lung info. Hope you are feeling better and better! Reply when can. Hugs, carol........... Suzi What is a weed? A plant whose virtues have not yet been discovered. health/ http://suziesgoats.wholefoodfarmacy.com/ http://360./suziesgoats

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[Guest guest]

I'm glad something is helping. Pain sucks!

My mother used to make us balance a book on our heads and walk to give good posture. She said imagine a string suspending you from the top of your head. Posture makes a difference in how everything hangs together.

Gayla Always Enough RanchAcampo, Californiahttp://bouncinghoofs.com/alwaysenough.htmlBill Barnhill is our Inspiration! Go Bill!!!aeranch@...

----- Original Message -----

From: Suzanne

carolG ; health

Sent: Friday, November 03, 2006 1:11 PM

Subject: Re: Lungs

you're welcome... well, bit the bullet so to speak..(this is the first time in a long time I could not treat myself). saw the dr (the one before the surgeon)... I'm taking cortisone (pill form) for 6 days... along with muscle spasm pill.

and have major pain med if needed.. Could not take the pain any longer and nothing I was doing was giving any relief..(and did I take some herbs! everything but the kitchen sink as they say..) I started the cort yesterday... and can already see a difference - pain is mostly tolerable.. had to take a pain pill last nite and this a.m.

before this I would sit and cry the pain was so bad...hot/cold, oils,, nothing was working... I'm in therapy now 3 days a week for 2 wks and then go back to see what is next if therapy is not working... The chiro says definitely do the exercises even though the hurt.. They're all on the same page with trying to stretch out the neck... The dr said the top half of my neck is like a 20 yr old... but the bottom half is like an 80 yr old... bone spurs that probably been building for yrs.. The chiro and dr both are optimistic on the therapy... which makes me happy. I'm using my right hand some but not alot yet... this message is with both hands.

Thanking everyone who has kept me in their prayers.. One thing the dr said was people need to be concious of their posture as most people aren't and slump alot.. even when walking people don't throw their shoulders back, hold their head high etc

so you young people... watch your posture.. that is one thing that you can do for good health later down the road.carolG <cgiambri@...> wrote:

Ran of time yesterday to say thanks for Lung info.

Hope you are feeling better and better! Reply when can.

Hugs,

carol...........

Suzi

What is a weed? A plant whose virtues have not yet been discovered.

health/

http://suziesgoats.wholefoodfarmacy.com/

http://360./suziesgoats

We have the perfect Group for you. Check out the handy changes to .