My symptoms

[Guest guest]

Hi Karon,

I am so sorry how you were misdiagnosed. I know alot of us were/have

been, myself having several 'other' diseases for 'awhile' too. But when

the final picture got clear with EVERY test known to neurology, man and

woman, incarcerated in UCLA's Institute for a week while the testing

went on, it was again determined I have CMT. I was 27 then. A long time

had passed since primary diagnosis when I was.

No one in my family has it/ or had it as far as I have been able to

see/watch/research determine. OK, you asked my chief symptoms: Since I

was first diagnosed (by an orthopedist), I had poor balance, fatigued

easily from walking home from school (1 mile), my left ankle rolled

outward, right ankle and foot rolled in. So, surgery took care of the

foot rolling. In my teens, came the muscle tenseness, stiffness and

rigidity, also spasming, and lots of falls - all this mostly from noon

on. And immense fatigue. I HAD to sleep alot. About age 19 or 20, I

'developed' a very noticeable tremor in my hands.

Life now: tremor under control nicely with medication; it seems the same

med for tremor has helped my balance, so has wearing orthotics. My feet

are still high arched, with hammertoes now. I know the high arches were

always there, I think at one time my toes might have been straight.By

'nature' I am a 'toe walker' - meaning when I put my foot out to take a

step, my toes hit the ground first, heel follows. So the way my

orthotics are made, they correct this toe walking and I walk heel then

toe. Friends tell me when I am fatigued I show limp in my right leg. Oh,

now, the fatigue is not so much an issue anymore. I guess in mid-life I

am looking back on this and comparing and trying to remember. Oh, now I

fall about 3 times a year. No, I am not at all sedentary, very active,

so go figure with all this. My main complaint is when my tremors get out

of control. Like undue stress (as caregiver for my ill mother or a car

accident or surgery). It takes about 2 months to get my tremors back

under control.

~ Gretchen

[Guest guest]

I am sufering form migraine/neck headaches as well. Nothing preventative

works, but what works for the pain is Imitrax. It takes about 20-25 min and

the pain is gone.

>From: " Schultz " <lauraslistserve@...>

>Subject: RE: My Symptoms

>Date: Mon, 9 Feb 2004 15:24:36 -0500

>Jerri,

>I have the same problem -- exactly. I cannot shed any light and so far I

>just suffer through it. There probably is some solution and I always

>intend

>to look for it. Then the headache/neckache goes away and I forget...

> S.

My Symptoms

>I hate to put a post out about myself but since I want to stay as well

>as I can to take care of my two boys. I was hoping someone here

>might have some help. Currently I am suffering with a severe headache,

>migraine in nature, I have had these most of my life at the end of my

>period. My GYN said this would coincide with low estrogen. I take

>estroven and it seemed to help for awhile. I am now 45 years old and

>some of this could be perimenopausal or menopausal. The headaches get so

>bad I can hardly do anything sometimes for three days and no OTC

>prescriptions seem to help. Last night I woke up and my entire head and

>neck was in severe pain and stiffness. I drank water and took two

>aspirin and went back to bed. This morning I'm a little better. I do

>have some of the symptoms of diabetes, excessive thirst, frequent

>urination, blurred vision. I did read about encephalitis and they talked

>about virus' and also with diabetes the immune system can stop the

>pancreas from producing insulin. Which lead me here. Do any of you Moms

>have any of these symptoms? Can you shed any light? I know when I go to

>a Doctor they can't seem to help you with any preventative stuff nor

>piece it all together. If you want to post me privately that would be

>fine or ask more questions. I don't want to fill the board with

>irrelevant stuff. Thanks in advance, Jerri Gann .

____________________________________________

Responsibility for the content of this message lies strictly with

the original author(s), and is not necessarily endorsed by or the

opinion of the Research Institute.

[Guest guest]

I suffered from migraines from the time I was 14 until I went through

menopause. I am 54 now...I tried many kinds of prescribed and otc meds. Once

when I was in excruciating pain at 3:30 in the morning I phoned my doctor

for help and another doctor was taking his calls....His advise was a

lifesaver for me so I will pass on the info: Take 2 Dramamine along with 4

Advil (or their generic forms)....I am here to tell you ...it worked! I used

this remedy at the first sign of a migraine for the past several years

before I finally stopped having them...and saved lots of money ...Imatrex

was so very expensive and didn't really help a whole lot for me..and I was

given a lot of other prescription drugs and pain medications over the

years...I know everyone is different but the Dramamine and Advil are both

otc and can be bought very cheap....maybe this will help some of you other

ladies out there...God bless..Shirley

My Symptoms

> >

> > >I hate to put a post out about myself but since I

> > want to stay as well

> > >as I can to take care of my two boys. I was

> > hoping someone here

> > >might have some help. Currently I am suffering with

> > a severe headache,

> > >migraine in nature, I have had these most of my

> > life at the end of my

> > >period. My GYN said this would coincide with low

> > estrogen. I take

> > >estroven and it seemed to help for awhile. I am now

> > 45 years old and

> > >some of this could be perimenopausal or menopausal.

> > The headaches get so

> > >bad I can hardly do anything sometimes for three

> > days and no OTC

> > >prescriptions seem to help. Last night I woke up

> > and my entire head and

> > >neck was in severe pain and stiffness. I drank

> > water and took two

> > >aspirin and went back to bed. This morning I'm a

> > little better. I do

> > >have some of the symptoms of diabetes, excessive

> > thirst, frequent

> > >urination, blurred vision. I did read about

> > encephalitis and they talked

> > >about virus' and also with diabetes the immune

> > system can stop the

> > >pancreas from producing insulin. Which lead me

> > here. Do any of you Moms

> > >have any of these symptoms? Can you shed any light?

> > I know when I go to

> > >a Doctor they can't seem to help you with any

> > preventative stuff nor

> > >piece it all together. If you want to post me

> > privately that would be

> > >fine or ask more questions. I don't want to fill

> > the board with

> > >irrelevant stuff. Thanks in advance, Jerri Gann .

> > ____________________________________________

> >

> > Responsibility for the content of this message lies

> > strictly with

> > the original author(s), and is not necessarily

> > endorsed by or the

> > opinion of the Research Institute.

[Guest guest]

Jerri,

You may want to check out the book called " Enzymes and Autism " by

DeFelice. suffered from debilitating migraines all her

life until she found a good medication (name eludes me) and started

taking enzymes. I think she had casein issues. She is also the

moderator of the Enzymes and Autism group.

Kim in MD

Currently I am suffering with a severe headache,

> migraine in nature, I have had these most of my life at the end of

my

> period. Do any of you Moms

> have any of these symptoms? Can you shed any light? I know when I

go to

> a Doctor they can't seem to help you with any preventative stuff

nor

> piece it all together. If you want to post me privately that would

be

> fine or ask more questions. I don't want to fill the board with

> irrelevant stuff. Thanks in advance, Jerri Gann .

[Guest guest]

This is really interesting. I may give this a try

sometime. I have also heard that aspirin is actually

more effective with migraines that any other otc

painkiller. Caffeine is something else that is

supposed to helped. These are 2 of the 3 ingredients

that are also in excedrin migraine. Barb

--- Shirley Mooney <samm0079@...> wrote:

> I suffered from migraines from the time I was 14

> until I went through

> menopause. I am 54 now...I tried many kinds of

> prescribed and otc meds. Once

> when I was in excruciating pain at 3:30 in the

> morning I phoned my doctor

> for help and another doctor was taking his

> calls....His advise was a

> lifesaver for me so I will pass on the info: Take 2

> Dramamine along with 4

> Advil (or their generic forms)....I am here to tell

> you ...it worked! I used

> this remedy at the first sign of a migraine for the

> past several years

> before I finally stopped having them...and saved

> lots of money ...Imatrex

> was so very expensive and didn't really help a whole

> lot for me..and I was

> given a lot of other prescription drugs and pain

> medications over the

> years...I know everyone is different but the

> Dramamine and Advil are both

> otc and can be bought very cheap....maybe this will

> help some of you other

> ladies out there...God bless..Shirley

______________________

Responsibility for the content of this message

lies strictly with the original author(s), and is not necessarily

endorsed by or the opinion of the Research Institute.

__________________________________

[Guest guest]

You're really lucky you got them out so quickly. It sounds like you

had an immediate reaction to them. You should be fine. I wouldn't

worry about a lift at this time.

hugs,

Beth

--- In , " ness19712001 " <yagoob94@a...>

wrote:

> first week great no pain or meds needed .week 2 started feeling

very

> dizzy, sick to my stomach, wanting to throw up all day long ,

then

> as the weeks went by i started having diarea when ever i ate ,

then

> wheezing in my chest then red little dots then all the shakes and

> sweating came plus chills it was like my central nervous system

went

> totally crazy. my doc was saying nothing wrong with the implant

looks

> goood . you could be nervous or something . i was ill and all my

> test came back great blood, ,heart, chest x ray. i also started

> getting a ringing in ear, eyes felt wierd and i had tingling in my

> face and hands it was if it would tingle then go cold. i took them

> out because, i was totaaly use less, couldnt be a good mom to

wraped

> up with trying to control all of this. i just need to rela and let

my

> body heal please let me know if these symptoms are similar to

anyones