Breathing - I really need advice and help

[Guest guest]

Lenore,

A few thoughts: Are all these doctors sharing your health

information and keeping it updated and were your medical records

from Cleveland sent to Memphis? We all know breathing issues are

serious in CMT, unfortunately, there are doctors that don't.

What about seeing CMT knowledgeable doctors in Memphis - like

Tulio E Bertorini, MD, FAAN Neurology

Wesley Neurology Clinic 1211 Union Ave, Suite 400

Memphis, TN 38104 Tel: 901-725-8920

R Menkes, MD Neurology

University of Tennessee College of Medicine

855 Monroe Ave, Link Bldg, Rm 415 Memphis, TN 38163

Tel: 901-448-6199

F Pfeiffer, MD, FAAN Neurology

University of Tennessee Health Science Center

855 Monroe Ave 415 Link Bldg

Memphis, TN 38163 Tel: 901-448-6811

No way did you cause this to happen. I hope perhaps you can get to

one of these Neurologists who understand the CMT issues.

Gretchen

[Guest guest]

Are you on any medications? I was on some blood pressure medications...it was

fine at first but then after a while became Toxic to my system and I couldn't

breathe.

Geri

[Guest guest]

Lenore, I also cannot breathe when lying down and do not feel as if my

pulmo has done much to help me and I intend to find another pulmo. At

first I could breathe while lying on my side, but not anymore. I

cannot breathe while putting on socks or bending over. I have gone

through all the breathing tests, and I sleep with a Bi-PAP machine.

Because I get tired so easily and need to rest in the afternoons, I

have to put on the face mask and turn on the Bi-PAP machine when I lie

down. CMT has been traced back for more than 100 years in my family,

and several other family members have had similar breathing problems.

However, they did not have the technology we have today.

But just must do all you can do to protect your health. It's your

money--you choose the doctors you want. They should be working for your

benefit.

--Joe

[Guest guest]

Dennis,

No matter how i sleep i feel crushed. I purposely

slept on my back because I wanted to see if my sats

would drop. They don't seem to drop as low on my side

or sitting up. I really feel like I need the help

nearly all the time breathing now, like i am starving

for air. I had no idea that my sats would drop so low

because they are typically pristine. they didn't go to

68! not yet! but we are just realizing what this is

doing to me. My lowest sustained O2 was 83. not

horrible but not typical for a 35 yr old either

without central apnea.

They don't want me to have a full face mask because of

the possibility of aspiration but So far my swallowing

difficulties arent THAT severe yet? when I am

congested it is very hard to breathe through my nose

and my nose is nearly always congested,so I have to

constantly fight to breathe either way!

Because we are Navy,and Katrina transplants,its

been difficult to have steady care. How do your

doctors deal with this if it happens to you? does

anyone else have diaphram " asthma " like symptoms???

My concern is that I am going to wait too long next

time to go to the hospital so that i dont get

harassed.

[Guest guest]

the funny thing about our " pedigree " in CMT is that my

grandfather was diagnosed in 75. We are certain his

mom had it but wasn't diagnosed before her passing.

He was put on display at multiple VA hospitals. His

CMT came into question when I originally got tested.

They looked at his records, decided his nerve biopsy

wasn't severe enough, saw I had some reflexes and told

me there was no way I had it.

It wasn't until last year when my peroneal nerves

went bad on both legs and my muscles wasted away that

they began checking back into it. Its been such an

uphill battle. The neuros agree, I think, that I have

it now but because my peroneal emg isn't AS bad as it

should be?? when they did the athena test for 12

types of CMT only 1 of them came back inconclusive and

they said they don't know what the protein does. My

swallowing is now delayed and diaphragm isnt working

properly but no one either can or will diagnose me. I

asked about ALS as well because we have a lot of

symptoms in common and because my grandfather also had

emphysema and multiple myeloma I am sure they didn't

further test him.

clear as mud right?

Thank you everyone for all of the info,,,,keep it

coming I need the encouragement to keep up the fight.

I am so very tired

Lenore in memphis

--- " J. " <drjed3@...> wrote:

> Lenore, I also cannot breathe when lying down and do

> not feel as if my

> pulmo has done much to help me and I intend to find

> another pulmo. At

> first I could breathe while lying on my side, but

> not anymore. I

> cannot breathe while putting on socks or bending

> over. I have gone

> through all the breathing tests, and I sleep with a

> Bi-PAP machine.

> Because I get tired so easily and need to rest in

> the afternoons, I

> have to put on the face mask and turn on the Bi-PAP

> machine when I lie

> down. CMT has been traced back for more than 100

> years in my family,

> and several other family members have had similar

> breathing problems.

> However, they did not have the technology we have

> today.

>

> But just must do all you can do to protect your

> health. It's your

> money--you choose the doctors you want. They should

> be working for your

> benefit.

>

> --Joe

>

>

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