Can CMT be Fatal?

[Guest guest]

Good Afternoon!

I have CMT 1-A.

In 1995 my sister, (who had CMT 1-A) ended up in ICU. She had told her

doctor for months she had problems breathing. They sent her away saying it had

nothing to do with CMT…gave her an inhaler, and left it at that. After month of

her lungs filling up with carbon dioxide…not to mention all the suffering she

went through…she became delirious and was taken to the hospital. After weeks in

ICU her doctor gave her the choice to go off the

ventilator and die, or go home never being able to talk again, or get off the

ventilator. chose to go home (thank God) and after a few weeks… she

talked up a storm, and was off the vent during the day.

She lived another 9 years! Every year sent her doctor a Christmas card

and told him she was still alive, and enjoying life. That she did! was

the most positive person!

When got out of the hospital … they decided the breathing problem was

caused by CMT.

In 1996 a respiratory doctor checked me, and at that time they found I only had

half of my lung capacity. I was tested on a Voldyne

5000 Exerciser; I could get up to 2500. The highest is, 5000. Now, 10 years

later, I am at 500 and sometimes lower. I believe the reason my health

deteriorated so fast was because of the of the Phrenic nerve, I went through a

divorce, lost my dad to cancer, lost my sister to CMT and I ate bad.

I have five CMT’ers in my family, and I have watched how “STRESS” has been a

main factor on causing more symptoms of this disease.

My breathing problems from Phrenic nerve paralysis has caused complication such

as, vocal paralysis which results in hoarseness and shortness of breath. I also

feel at times like I am suffocating. This happens when I am tired, lie down

without my ventilator on, full stomach, eat MSG, or in the past when I drank

carbonated drinks.

From what I understand, the carbonation in the drinks, forces carbon dioxide

into the cells...temporarily forcing the oxygen out of our cells. This I am

told causes damage to the nerves. I have found drinking chlorophyll helps put

oxygen back into my cells.

I am trying to get people to know, CMT can be fatal for some CMT'ers. With some

knowledge… I do feel we can help slow it down...that is why I want people to be

" aware " ! Anytime I am stressed, tired, don’t get enough exercise, or don’t eat

right…my symptoms worsen. I also believe the bi-pap I use helps rest the

diaphragm when I sleep. This is so important!

Last year I sent this letter to the Charcot Marie Tooth Foundation. I also have

enclosed their response and then my response back…

My letter…

I was checking out your site about Charcot Marie Tooth. It said,

" Therefore, affected individuals can never be sure about the extent of the

ultimate severity of their condition. Lifespan is unaffected "

I am here to let you know… " Lifespan " can be affected by CMT. My sister passed

away from her diaphragm deteriorating from CMT.... mine is also deteriorating,

and I will most likely die because of CMT. I also know others whom have died.

I am hoping to see sites like yours, updated so people know CMT can be a fatal

disease. Maybe with the correct information... people can get help and more

research will be done!

I hope you will update your site.

Thank you!

Kay

Their response….

In general, CMT is not fatal and to say that it is would alarm people who do not

have any diaphragm involvement. We do say in most of our papers that it is not

usually fatal. We recognize that in rare instances, it can be responsible for a

person's death.

Sincerely,

The Charcot-Marie-Tooth Association

My response…

Thank you for your response. The problem is.... I know people, because of sites

like yours that don't want to " alarm people " ... can't get their doctors to

understand the deterioration of the diaphragm, which most likely is fatal. My

sister's doctor told her, her breathing problems had nothing to do with CMT,

until a few years later when she ended up in emergency, and almost died…later

she did die from CMT. She most likely would have lived a longer life had they

known CMT could affect the diaphragm and be fatal. Maybe then doctors would have

listened to her.

What a shame because of yours, and many other sites that don't want to " alarm

people " , ...that people like my sister have to go through so much suffering! I

am one of the lucky one's because of my sister... the doctor now knows it

affects the diaphragm, and because of that knowledge he put me on a bi-pap. My

life will be shortened because of CMT, but I would rather be " alarmed " and get

some help...then have a doctor, not know, and send me on my way...

Knowledge is Power!

Sincerely,

Kay

Well, this is hard for me to write about, but if it just helps one person…it is

well worth it! It just breaks my heart every time I see a post about a doctor

not understanding what you are going through. I know it’s so hard!!! Stay

positive, and avoid STRESS the best you can!

Kay ~ Seaside Oregon