Re: Does the place you live affect CMT differently?

[Guest guest]

Don't know if change of scenery, etc. might help, but we should try

anything, right?

I have been told that the dry Western states lessen some CMT symptoms.

P. from South Central NYS.

In a message dated 2/18/2011 2:47:09 P.M. Eastern Standard Time,

tainosrd@... writes:

Hi! This is Betania. I have a question that might be seem senseless but I

need to ask. Does any of you think that the area were you live (countries)

affect CMT differently?

I lived in USA for the last 20 years and moved to Switzerland a year and a

half ago. I declined a lot while here but, I heard that's normal at my age

(39), a sudden onset. The reason for my question is, that I had to travel

to NY for a month due to a family matter, to my surprise, while in NY I was

able to function just like I did when I lived there.

I could walk without the numbness and pain for longer periods (a lot

longer) here in Swiss after half a block I am already limping, one of my feet

feel like wood, plus numb and I get this weird sensation that every step is

like a lottery were I might fall.

I just would appreciate if any of you could give it a little thought and

see if you feel worse or better depending on the area. I have to say I found

out the altitude here in Switzerland is greater than in many places.

Thanks in advance, any opinion would be highly appreciated.

Betania

[Non-text portions of this message have been removed]

[Guest guest]

Altitude affects me severely; I live at sea level, and last weekend I went

to a mountain resort at 6000 feet. I was tired almost all the time, and had

to stop walking to catch my breath often.

Benjy, 35, CMT 1A

On Fri, Feb 18, 2011 at 11:29 AM, B B <tainosrd@...> wrote:

> Hi! This is Betania. I have a question that might be seem senseless but I

> need to ask. Does any of you think that the area were you live (countries)

> affect CMT differently?

>

--

benjy@...

[Guest guest]

Hi Betania,

No. But living at a higher altitude DOES have an affect on many persons, not

only those with CMT.

I had this happen to me when I moved from Los Angeles (sea level) to Cheyenne,

Wyoming (altitude of about 6,000 feet - over a mile high) I started a new job

with immense enthusiasm, only to feel what were almost overnight/sudden symptoms

such as falling, ready to sleep at 2 pm from fatigue, wacked out balance and

even breathing.

I went right to a neurologist who explained " altitude sickness " to me. Smart guy

and I was relieved that in time my body would adjust which it did. When I

returned to Los Angeles I had way more energy, no fatigue, no balance problems.

The altitude sickness is caused by less oxygen/thinner air at higher altitudes.

Now when I go to or Cody (much higher) even though it is just for a

visit, the first few days I rest completely, then I am OK for the rest of the

time. ( is about 10,000 ft) My skier friends do the same thing before

hitting the slopes.

It only makes sense that having CMT would make the altitude effects worse.

Here's some info http://en.wikipedia.org/wiki/Altitude_sickness

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001190

Gretchen

[Guest guest]

That's a very interesting question.

>

> Hi! This is Betania. I have a question that might be seem senseless but I

need to ask. Does any of you think that the area were you live (countries)

affect CMT differently?

>

> I lived in USA for the last 20 years and moved to Switzerland a year and a

half ago. I declined a lot while here but, I heard that's normal at my age

(39), a sudden onset. The reason for my question is, that I had to travel to NY

for a month due to a family matter, to my surprise, while in NY I was able to

function just like I did when I lived there.

>

> I could walk without the numbness and pain for longer periods (a lot longer)

here in Swiss after half a block I am already limping, one of my feet feel like

wood, plus numb and I get this weird sensation that every step is like a lottery

were I might fall.

>

> I just would appreciate if any of you could give it a little thought and see

if you feel worse or better depending on the area. I have to say I found out

the altitude here in Switzerland is greater than in many places.

>

> Thanks in advance, any opinion would be highly appreciated.

>

>

> Betania

>

>

>

>

[Guest guest]

Are there any CMT folks here who use oxygen generating machines? If so, do they

make a difference?

Do any CMTers have experiences from visiting places like the Dead Sea, which is

way below sea level?

>

> Hi Betania,

>

> No. But living at a higher altitude DOES have an affect on many persons, not

only those with CMT.

>

> I had this happen to me when I moved from Los Angeles (sea level) to Cheyenne,

Wyoming (altitude of about 6,000 feet - over a mile high) I started a new job

with immense enthusiasm, only to feel what were almost overnight/sudden symptoms

such as falling, ready to sleep at 2 pm from fatigue, wacked out balance and

even breathing.

>

> I went right to a neurologist who explained " altitude sickness " to me. Smart

guy and I was relieved that in time my body would adjust which it did. When I

returned to Los Angeles I had way more energy, no fatigue, no balance problems.

The altitude sickness is caused by less oxygen/thinner air at higher altitudes.

>

> Now when I go to or Cody (much higher) even though it is just for a

visit, the first few days I rest completely, then I am OK for the rest of the

time. ( is about 10,000 ft) My skier friends do the same thing before

hitting the slopes.

>

> It only makes sense that having CMT would make the altitude effects worse.

Here's some info http://en.wikipedia.org/wiki/Altitude_sickness

>

> http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001190

>

>

> Gretchen

>

[Guest guest]

Hi Betania,

My daughter complained that her CMT appeared worse in Switzerland as well. I

thought it was the hard weather. She gets cold and has a hard time warming up.

Maybe it was the altitude but I assumed weather.

In a message dated 2/18/2011 11:47:10 A.M. Pacific Standard Time,

tainosrd@... writes:

Hi! This is Betania. I have a question that might be seem senseless but I

need to ask. Does any of you think that the area were you live (countries)

affect CMT differently?

I lived in USA for the last 20 years and moved to Switzerland a year and a

half ago. I declined a lot while here but, I heard that's normal at my age

(39), a sudden onset. The reason for my question is, that I had to travel

to NY for a month due to a family matter, to my surprise, while in NY I was

able to function just like I did when I lived there.

I could walk without the numbness and pain for longer periods (a lot

longer) here in Swiss after half a block I am already limping, one of my feet

feel like wood, plus numb and I get this weird sensation that every step is

like a lottery were I might fall.

I just would appreciate if any of you could give it a little thought and

see if you feel worse or better depending on the area. I have to say I found

out the altitude here in Switzerland is greater than in many places.

Thanks in advance, any opinion would be highly appreciated.

Betania

[Non-text portions of this message have been removed]

[Guest guest]

Hi Betania:

I also think altitude will make a big difference in your

energy levels as you simply aren't getting enough oxygen to what

muscle mass you have left. We, who have CMT are trying to do what

everyone else does but with 40-50 % less muscle mass. Our muscles need

oxygen to work and we have less muscle to begin with and then you have

less oxygen because you're living way up there. That's two strikes

against us. No wonder we tire at a higher altitude.

I'm wondering if CoQ10 would help you when you're living in Switzerland? I

believe it improves the red cells ability to carry oxygen. You might research it

and give it a try. It really helps my fatigue and breathing. Without it I get

terrible headaches especially when I'm lying flat or upon waking. With it no

headaches, hardly any migraines. I take 200 mg a

day. Give it a couple of months. I've found it does pay off. Just a

thought for you.

, 68, the Great Lakes basin, CMT2A

[Guest guest]

Gretchen, Benjy, , S, thank you all.

Your answers have been of great help since, now I understand a lot of things

going on in my life. Now, I understand the migraines, fatigue and less

strength.

I seriously thought I was a lot worse, it was very surprising to see the

difference in NY. Sometimes, It is hard for the rest of the family to

understand our condition. We travel a lot and I can surely say I feel stronger

and less numb depending on the area.

I feel the need to say it is not a stay of mind since, I have my family here and

the nicest view and place one can imagine. PS: Suddenly, I felt accompanied

and understood by all of you.

Betania

[Guest guest]

I have been living in South Africa for the last 4 years at an altitude of

4000 ft. It is true that the oxygen level is less, but my body has adjusted

with no problems, and when I visit places with a lower altitude I have far

more endurance in terms of not tiring (breathing) when I walk or exercise.

I don't think for most people it would be a long term negative thing. My

breathing is " normal " at 4000 ft.

I have also experienced altitude sickness on one occasion. I was in

Colorado and drove up the steep side of Rocky Mountain National Park-

getting to the summit in less than an hour I believe. I got out of the car

and felt dizzy and nauseated. Drove a bit further to the visitor center and

went to the bathroom. They had a sign in the bathroom explaining altitude

sickness- and that I would feel better once I returned to a lower altitude.

Which I did. The altitude sickness happens when you don't allow your body

enough time to adjust gradually to a higher altitude, but most people

recover from it quickly when returning to a lower altitude.

Blessings,

Barb from South Africa (mild sensory CMT- probably 1A or 1B)