RE: Intro - New member

[Guest guest]

Hi, Alan,

Welcome to the group! .. To answer your question wondering if anyone

gets flu-like symptoms after having done too much .. Yes, I do .. and

the more I do, the worse the flu-like symtoms will be. It's almost as if

I wear myself out SO much (but only because of this problem) that my

body can't handle it. I actually am just getting over this flu-like

ordeal

now. I understand exactly. I wonder if that is something else intertwined

with CMT.

For a good while, I've always wondered if these diseases popping up

are just one or two or more diseases that a person has that only seem

like one disease in itself. Does what I'm saying make any sense? I'll

try and explain better, if not.

Anyway, always good to see new faces..... Hope you find it useful,

and enjoy it as well.

Regards,

On Sun, 14 Oct 2001 04:33:18 -0000 atucker2567@... writes:

> Hi, everyone, my name is Alan and I am a 51 year old male with CMT,

> Fibromyalgia, and Degenerative Disc Disease. My father, grandfather,

>

> and 2 uncles also had CMT. I have experienced significant pain over

>

> the years but the last 2 years the pain and fatigue became too much

>

> to handle. After making the rounds of a couple of million doctors,

> I

> ended up at a pain clinic and am no longer working.

>

> I have a three questions I would appreciate comments on for those

> who

> want to:

>

> 1. I am having poor experience with my local MDA. The doctors

> don't

> seem to know much about CMT (one thought there was no pain with CMT

>

> and the other thought you " must " have thin calves or you couldn't

> have CMT). My reading suggests both opinions are wrong. Anyone have

>

> similiar experiences with MDA? Do most of you see a private

> neurologist? I have seen two outside of MDA and they didn't know

> much about CMT either. They told me there was nothing to be done

> and

> never discussed AFOs, therapy, etc.

>

> 2. I am experiencing an uncomfortable sensitivity on the skin

> of my arms, hands, and the top of my head. If my wife brushes her

> hand across these areas just lightly it is painful, Anyone heard of

>

> this?

>

> 3. Anyone get flu-like symptoms after having done too much (I saw

> one post that did mention this)? I don't seem to read much about

> this but I get this pretty regular unless I really scale my activity

>

> level down.

>

> I look forward to sharing information and support with all of you.

>

>

>

>

>

>

> Foundation: http://www..org

>

>

>

[Guest guest]

Welcome Alan,

You have come to the right place. You will find the support you need here and

the answers to many of your questions.

I am sorry you have to go through what many of us have, but it seems to be

part of the drill.

As far as the flu like symptoms, I have had them many times and you are

right. Pacing yourself will help. Sometimes you don't even realize that you

did too much and some of it can be caused it seems from stress alone.

I wish you the best and always remember we are here for you. I have only been

on here a very short time and have so many answers just by reading post from

others.

" listen to your body "

[Guest guest]

In a message dated 10/13/2001 9:34:11 PM Pacific Daylight Time,

atucker2567@... writes:

> , I

> ended up at a pain clinic and am no longer working.

>

>

How do you like the pain clinci? Did it work?

jenny

[Guest guest]

Hi ,welcome i've only been a member one week and

it is the best thing that has happened since I got

saved beside my family of course. I am a 37 year old

female with CMT and yes my skin is so sensitive to

touch at times I can't hardly stan for my cloths to

touch my skin the thighs are most sore and my

midsection, If I understand it right this is part of

the CMT called Perrineal Muscle Neuropathy.Anyway

Welcome and I hope you find this to be as helpful

as I have already.

GOD BLESS,

ANNIE

> On Sun, 14 Oct 2001 04:33:18 -0000

> atucker2567@... writes:

> > Hi, everyone, my name is Alan and I am a 51 year

> old male with CMT,

> > Fibromyalgia, and Degenerative Disc Disease. My

> father, grandfather,

> >

> > and 2 uncles also had CMT. I have experienced

> significant pain over

> >

> > the years but the last 2 years the pain and

> fatigue became too much

> >

> > to handle. After making the rounds of a couple of

> million doctors,

> > I

> > ended up at a pain clinic and am no longer

> working.

> >

> > I have a three questions I would appreciate

> comments on for those

> > who

> > want to:

> >

> > 1. I am having poor experience with my local MDA.

> The doctors

> > don't

> > seem to know much about CMT (one thought there was

> no pain with CMT

> >

> > and the other thought you " must " have thin calves

> or you couldn't

> > have CMT). My reading suggests both opinions are

> wrong. Anyone have

> >

> > similiar experiences with MDA? Do most of you see

> a private

> > neurologist? I have seen two outside of MDA and

> they didn't know

> > much about CMT either. They told me there was

> nothing to be done

> > and

> > never discussed AFOs, therapy, etc.

> >

> > 2. I am experiencing an uncomfortable sensitivity

> on the skin

> > of my arms, hands, and the top of my head. If my

> wife brushes her

> > hand across these areas just lightly it is

> painful, Anyone heard of

> >

> > this?

> >

> > 3. Anyone get flu-like symptoms after having done

> too much (I saw

> > one post that did mention this)? I don't seem to

> read much about

> > this but I get this pretty regular unless I really

> scale my activity

> >

> > level down.

> >

> > I look forward to sharing information and support

> with all of you.

> >

> >

> >

> >

> >

> >

> > Foundation: http://www..org

> >

> >

> >

[Guest guest]

Hi Alan,

I never even thought of going to an MD clinic for care. All I have seen are

private docs. Not that the experience has been any different than yours. I

have found at least one of the docs on my team understands CMT. This is

great because then he can help me to inform the others on the team. You

didn't say where you were from. Maybe someone on the list has a good doc

where you are and can refer you already... No on needs to stick with a bad

doc. I have gone through a lot of them and can tell you it Makes the days

the worse.... I usually have a short interview before deciding if I will

continue to see any doctor. But then I have a good insurance who pays well.

As for the sensitivity of your skin. I don't know if this is part of CMT

either, but I can tell you that this happens to me quite often. My doctor

thinks that it is part of my disease process. Sometimes it is so bad that

at night I sleep with my legs hagging off the bed with no support just so

nothing will touch them. I am trying something in physical therapy to get

used to touch on my skin- So far, I don't see any difference.

And lastly, I don't get any flu-like symptoms when I do a little more than

ususal. Instead, I am totally out of commission for a day and my body

rebels with extreme bouts of pain. So much so that I am unable to work or

even eat. Just like this past week end...

I went to Chicago to my oldest neices's wedding. The wedding went great. I

had a lot of fun being with my family. Then Sunday I had to get up early in

the morning to get a flight back to Atlanta, Once back home, I could not

move. All I could do was to crawl into bed and sleep. Of course I

did...next thing I knew it was Tuesday morning... Somehow Monday had slipped

by... Which was not good... I had not called into work and I had not taken

any meds during that time... So we all react differently to overdoing

things...

Today I am back at work and back on track again... Well all most...it will

take another day or so to get my pain under control.

Colette Zyrkowski

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

From: atucker2567@... [mailto:atucker2567@...]

Sent: Sunday, October 14, 2001 12:33 AM

Subject: [] Intro - New member

Hi, everyone, my name is Alan and I am a 51 year old male with CMT,

Fibromyalgia, and Degenerative Disc Disease. My father, grandfather,

and 2 uncles also had CMT. I have experienced significant pain over

the years but the last 2 years the pain and fatigue became too much

to handle. After making the rounds of a couple of million doctors, I

ended up at a pain clinic and am no longer working.

I have a three questions I would appreciate comments on for those who

want to:

1. I am having poor experience with my local MDA. The doctors don't

seem to know much about CMT (one thought there was no pain with CMT

and the other thought you " must " have thin calves or you couldn't

have CMT). My reading suggests both opinions are wrong. Anyone have

similiar experiences with MDA? Do most of you see a private

neurologist? I have seen two outside of MDA and they didn't know

much about CMT either. They told me there was nothing to be done and

never discussed AFOs, therapy, etc.

2. I am experiencing an uncomfortable sensitivity on the skin

of my arms, hands, and the top of my head. If my wife brushes her

hand across these areas just lightly it is painful, Anyone heard of

this?

3. Anyone get flu-like symptoms after having done too much (I saw

one post that did mention this)? I don't seem to read much about

this but I get this pretty regular unless I really scale my activity

level down.

I look forward to sharing information and support with all of you.

Foundation: http://www..org

[Guest guest]

HI Jacquie,

My name is Rita. I am new to this site as well. I

was diagnosed with PA in 2001, 2 months after my son

was born. I am also a stay at home mother, soon to

turn 31. My son is now almost 3 and I must say I feel

better now than I did 3 years ago. I have my ups and

downs. I have severe pain when a new finger flares.

I have one good finger on my left hand, which is my

middle finger. My ring finger flared about a year

ago, which makes it impossible to wear my wedding

ring. The pain was awful when that happened, but I

think I have just learned to ignore the pain. My index

finger only moves at the tip. I am also contemplating

surgery for that finger, but am searching for a good

Hand specialist. The last one was a let down.

Anyhow my life is much easier with a 3 year old. He

keeps me smiling and looking forward to the day.

Anyhow I take no meds as the one my rheumy put me on

(sulfasalazine) didn't work for 2 years but they still

kept me on it. I have given up on the rheumy and I

feel the same as I did on the horrible medicine that

was only hurting my liver. Anyhow they tried to put

me on Methotrexate but I decided against, as it has to

many side effects and I'd like to have another baby.

Anyhow that is part of my story. I really don't know

any one else with PA, so I am looking forward to

learning info from others on this website.

Thanks for listening.

Rita - Colorado

[Guest guest]

Hi rita,

My name is vidya and ur story looks just like mine. I am 30 yrs and started

having my PA when my daughter was a year old. Then with ayurvedic medicine

(herbal medicine) i was cured completely so that i thought i can go for second

one and when my daughter was 3 yrs old i went for 2 child but again because of

hormonal changes my PA arthritis flared up. I hv my appt.with rheumy on

wednesday and i will know what he says then

bye

vidya