New Member

[Guest guest]

In a message dated 11/3/99 11:56:37 PM Eastern Standard Time,

STMadrigal@... writes:

<< My daughter currently participates in a self-contained classroom for

Hearing-Impaired children through her local school district. They use a

method of total communication; instruction is given in ASL, reading in as

much ASL as possible with incorporation of SEE sign, speech therapy using a

method of cued speech, and inclusion in a regular education classroom for

specials (such as PE, Art, Music, etc.). For the most part I am happy with

her educational program. >>

Tami,

What a great program! Where do you live? I am moving there.

Eleanor

[Guest guest]

What type of program does your child participate in? A lot of services come

from parent involvement. I recently stopped working and have a lot more

time to look at how my children are being educated and a lot more time to

request the services I feel would be beneficial to them. It also has made a

big difference this year because I transition her from an inclusion regular

education classroom to a self-contained because she wasn't understanding

enough to be able to learn. The Special Ed Director here is Awesome, the

teacher has a little resistance as not many parents have been involved.

Re: New Member

> From: LadyJane50@...

>

> In a message dated 11/3/99 11:56:37 PM Eastern Standard Time,

> STMadrigal@... writes:

>

> << My daughter currently participates in a self-contained classroom for

> Hearing-Impaired children through her local school district. They use a

> method of total communication; instruction is given in ASL, reading in as

> much ASL as possible with incorporation of SEE sign, speech therapy using

a

> method of cued speech, and inclusion in a regular education classroom for

> specials (such as PE, Art, Music, etc.). For the most part I am happy

with

> her educational program. >>

>

> Tami,

>

> What a great program! Where do you live? I am moving there.

>

> Eleanor

>

> > All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

[Guest guest]

I know this discussion has gone on before, but it has finally become an issue

for me and I'd like some input. My daughter, Lily (2 1/2 prepro/CI dec 98) is

loving to

play on the plastic slides at BK or McDonss. Ae there any suggestinons on how

whe can prevent a problem>? Deb

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 11/4/99 11:03:28 AM Eastern Standard Time,

STMadrigal@... writes:

<< A lot of services come

from parent involvement. >>

Tami,

Most of the parents on this list are very involved with their child's

program. It still does not mean that their child is in a great program.

Sometimes, no matter how hard you work to get a good program for your child,

the personal or financial agenda of the school system personnel gets in the

way.

I am presently homeschooling because I am in the middle of a hearing that

is now going on for months due to postponements. My daughter has an IEP from

September, 1997. Isn't that illegal? Yes. Are they getting away with it?

Yes.

I cannot move, at this time, due to personal reasons. I happen to have

the best advocate and lawyer in the state. Sometimes parent involvement is

not enough.

Eleanor

[Guest guest]

You are absolutely right. I know because I was in a system like that for

three years. As I stated in my previous email, parent involvement is only

one piece, the DIRECTOR is awesome. I am lucky to have found a good

program. Even with what my program offers there are more services that my

child needs that this program does not provide. I too, am looking at

relocating, I would like to place my daughter into a school for the deaf but

we don't have the financial ability to do that. My husband is the only one

in the family that works and he makes to good of a salary to just let go of

it, and we own a house that we have to sell. I'm glad I haven't gotten to

the point where I feel that I need to pull her out, because I don't feel I

could give her an adequate program at home either. So....good for you!

Re: New Member

> From: LadyJane50@...

>

> In a message dated 11/4/99 11:03:28 AM Eastern Standard Time,

> STMadrigal@... writes:

>

> << A lot of services come

> from parent involvement. >>

>

>

> Tami,

>

> Most of the parents on this list are very involved with their child's

> program. It still does not mean that their child is in a great program.

> Sometimes, no matter how hard you work to get a good program for your

child,

> the personal or financial agenda of the school system personnel gets in

the

> way.

>

> I am presently homeschooling because I am in the middle of a hearing

that

> is now going on for months due to postponements. My daughter has an IEP

from

> September, 1997. Isn't that illegal? Yes. Are they getting away with

it?

> Yes.

>

> I cannot move, at this time, due to personal reasons. I happen to have

> the best advocate and lawyer in the state. Sometimes parent involvement

is

> not enough.

>

> Eleanor

>

> > All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

[Guest guest]

Don't take comments so personally. The other parents in my program don't

get involved at all and those are the parents I was referring to, that makes

it harder to get services because they are looking at the whole picture.

Re: New Member

>

>

> > From: LadyJane50@...

> >

> > In a message dated 11/4/99 11:03:28 AM Eastern Standard Time,

> > STMadrigal@... writes:

> >

> > << A lot of services come

> > from parent involvement. >>

> >

> >

> > Tami,

> >

> > Most of the parents on this list are very involved with their child's

> > program. It still does not mean that their child is in a great program.

> > Sometimes, no matter how hard you work to get a good program for your

> child,

> > the personal or financial agenda of the school system personnel gets in

> the

> > way.

> >

> > I am presently homeschooling because I am in the middle of a hearing

> that

> > is now going on for months due to postponements. My daughter has an IEP

> from

> > September, 1997. Isn't that illegal? Yes. Are they getting away with

> it?

> > Yes.

> >

> > I cannot move, at this time, due to personal reasons. I happen to

have

> > the best advocate and lawyer in the state. Sometimes parent involvement

> is

> > not enough.

> >

> > Eleanor

> >

> > > All messages posted to this list are private and confidential. Each

post

> is the intellectual property of the author and therefore subject to

> copyright restrictions.

>

> > All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

[Guest guest]

Jane Anne,

I got your message here in Austin, TX. Welcome to the group. Start asking the

questions, and we will try to answer.

Jo Ann

[Guest guest]

TO JANE ANN KING. YOU ARE COMING THRU LOUD AND CLEAR. WELCOME TO THE GROUP

AND ASK ANY QUESTIONS YOU LIKE. ONE OF US WILL PROBABLY HAVE AN ANSWER FOR

YOU. TAKE CARE, JEANNE ANN NEFF

[Guest guest]

Jane Ann:

You came through just fine. Welcome to our group.

Rita

[Guest guest]

Jane- you found us! Hooray! Lavon

[Guest guest]

Hi Jane,it made it up to Canada,welcome to our group,and ask away.

Take care & keep smiling,Dave Nunn

Jane Anne King wrote:

>

>

>

> I am a new member of the group. I was diagnosed with PLS last year.

> I tried posting a message last week but have received no answer. If

> any of you receive this, I'd appreciate hearing from you. I have many

> questions about PLS. Thanks.

> Jane Anne King

> gking@...

>

> ------------------------------------------------------------------------

> DON'T HATE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

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> ------------------------------------------------------------------------

[Guest guest]

Claribel,

It has been awhile since I got mine and there are many brands, some

local or regional. I would look for one that can be carried in your

car AND borrows from the sport models that are produced. The sport

models are the ones that tend to pioneer and test things like light weight

materials, easy transport, balance, wheel technology, and human motor techniques

(how easy it is to move the thing). You are not looking to race but

want easy maneuverability. Take you time and find a good medical

dealer. Mine is a Kruschall (?) and it worked for me during the last

two years I was able to work in a high school. It was also easy enough

to maneuver and light enough that I found myself pushing myself for exercise.

Emmett

Claribel Deda wrote:

My name is Deda and my husband was

diagnosed with PLS 11 years ago. We have a lot of questions we are hoping

others in our position can help us with. is going to retire this

year at the ripe old age of 47 and I know he is worried about what he is

going to do with himself. He is using a walker in the house now and a cane

when he goes to work, which doesn't give him much stability anymore. Since

he has to wear steel toed boots at work he has braces on both legs. Does

anyone have a baclofen pump? The doctors here keep trying to encourage

him to use one, and he says he isn't ready. Thanks for letting me ramble.

Looking forward to hearing from anyone.

[Guest guest]

JaneAnne,

I have not tried to sit that way in a long time, because I could not get up

afterward! I can't squat either, because I can't push myself back up.

Jo Ann

[Guest guest]

Jane Ann, I can't even squat cause I can't get back up. Not enough strength

in my legs. Jeanne Ann

[Guest guest]

DBrand,

I have a daughter working and living in ST.Pete. She works for

Consulting. I am sorry I have not written any of you

all to ask question but here they are now. Can you sit on your

feet legs are double back under you, I use to until I pulled that

groin muscle now I can not and if I try it takes me 2 days before

I can walk very well. I am own the walker more everyday when

I try this. Any way maybe some day I can I am not that young

lady anymore. My husband can not do this and he has nothing

wrong with him.

Thanks,

Jane Anne

Re: New member

From: DBrand1423@...Jane, Welcome to our mighty group. Ask awayFlora/St Pete Fl------------------------------------------------------------------------GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 2.9%Intro or 9.9% Fixed APR and no hidden fees. Apply NOW!http://click./1/936/5/_/532384/_/953044853/------------------------------------------------------------------------

[Guest guest]

JeanAnne

Dont know the company your daughters works for but will check out were its

located. To answer your question - I can put my legs under my buttocks I

can raise my self to a kneeling position but I really have to grab on to

something mostly my four wheel walker -I lock it and pull myself up -I can

push up with my right leg but my left leg is stiff while raising up. When I

walk its reversed my left leg becomes my stronger leg and my right leg is

more ridged. Doesnt make sense does it.....

Hope this helps keep the questions coming.

Flora/St Pete Fl

[Guest guest]

Welcome to the group. I hope that it remains confined to you lower

extremities. I live in Wisconsin, Green Bay to be exact. We are finally

staring to get some nice weather. I can't walk so I use a wheelchair and a

scooter. The scooter is for outside and it gives me a great feeling of

freedom. I don't work but manage to stay busy for the most part. I love to

read especially anything that is about the medieval era. Sta y in

touch. Kathy Hillary

theromers@... wrote:

> Hi everyone, I have just found this website and also just had my

> diagnosis of PLS. I was diagnosed nine years ago at age 56 with MS.

> I found through the years that I didn't have many of the symptoms of

> MS but did have foot drop, a spastic way of walking, and slight

> balance problem. Now that I have been diagnosed with PLS I find I do

> have all of the symptoms. I have questions, of course. My

> neurologist thinks this will remain in my lower limbs but the info on

> the computer suggests otherwise. I guess what I would like (to start

> with) is conversation about how it has affected others. I was

> delighted to find this website! Thanks for listening....Patsy Romer

>

> ------------------------------------------------------------------------

> eGroups eLerts

> It's Easy. It's Fun. Best of All, it's Free!

> http://click./1/3863/7/_/532384/_/957374901/

> ------------------------------------------------------------------------

[Guest guest]

Welcome to the group. I hope that it remains confined to you lower

extremities. I live in Wisconsin, Green Bay to be exact. We are finally

staring to get some nice weather. I can't walk so I use a wheelchair and a

scooter. The scooter is for outside and it gives me a great feeling of

freedom. I don't work but manage to stay busy for the most part. I love to

read especially anything that is about the medieval era. Sta y in

touch. Kathy Hillary

theromers@... wrote:

> Hi everyone, I have just found this website and also just had my

> diagnosis of PLS. I was diagnosed nine years ago at age 56 with MS.

> I found through the years that I didn't have many of the symptoms of

> MS but did have foot drop, a spastic way of walking, and slight

> balance problem. Now that I have been diagnosed with PLS I find I do

> have all of the symptoms. I have questions, of course. My

> neurologist thinks this will remain in my lower limbs but the info on

> the computer suggests otherwise. I guess what I would like (to start

> with) is conversation about how it has affected others. I was

> delighted to find this website! Thanks for listening....Patsy Romer

>

> ------------------------------------------------------------------------

> eGroups eLerts

> It's Easy. It's Fun. Best of All, it's Free!

> http://click./1/3863/7/_/532384/_/957374901/

> ------------------------------------------------------------------------

[Guest guest]

--Lyndal, welcome to our group. I joined about 4 months ago and

everyone is very supportive. I was diagnosed about 2 years ago after

15 years of no one knowing what was wrong with me, that seems to be

the story of most of us. I'm married and my husband is very

supportive also, we are very lucky. My legs are the only thing

effected at this time and I hope it stays that way. I live in the

State of Washington. Welcome again. Carolyn - In PLS-

FRIENDSegroups, LyndalGBrown@a... wrote:

> Hello everyone.

>

> I'm new to the list so thought I'd introduce myself. My name is

Lyndal, I'm

> 49 years old, I'm female (might be hard to tell from the name), I'm

married,

> I live in Cedaredge, Colorado (on the western slope of the

Rockies), and I've

> had PLS since May 1996 (4 long years).

>

> PLS affected my speech first. For about 1 week I had extreme

problems

> enunciating sentences because my tongue felt thick in my mouth, and

I had

> trouble with certain consonant sounds -- I would slur them, then it

got

> better again -- but I had to practice pronouncing the words I had

trouble

> with. A few weeks later I started getting out of breath after

climbing the

> stairs at work, and then I had a few totally unexpected falls. I

went to the

> doctor who sent me to a neurologist who said it might be MS. So, I

had an

> MRI which didn't show a thing, and the neurologist said wait and

see. By the

> next year I was falling frequently, having trouble with stiffness

in my legs,

> and felt unsafe using the stairs. I went back to the neurologist,

who sent

> me to get another MRI, gave me a spinal tap, and scratched his head

in wonder

> because he had no idea -- as these results were also negative. He

sent me to

> University Hospital in Denver where I was diagnosed with PLS in

September

> 1997.

>

> I let the people at work know about my disabling condition and they

> immediately moved me downstairs -- however the computer system I

was

> responsible for was upstairs. My legs continued to weaken, my

balance

> worsened, and I continued to have falls at work. I started

noticing weakness

> in my grip, my manual dexterity was affected, my reflexes were

becoming super

> sensitive, and I often dropped things. I had to give up more and

more of my

> duties and responsibilities during the next 9 months until July

1998 when I

> finally couldn't continue working, and retired on disability.

>

> For the past year and a half I have been using (more like dependent

on) a 4

> wheel walker. And recently I started using ankle/foot orthotics on

both legs

> -- I'm not sure if I'm going to like them in the hot, summer

weather. My

> arms and hands have become weaker as well. I have trouble writing

a check

> without losing my grip on the pen at least 3 times during the

process. My

> speech has worsened, but more slowly. I hate to talk on the phone

because

> others have trouble understanding me.

>

> I was on baclofen but it didn't seem to help much. The more I'd

take, the

> worse I felt (stiffness, aches, cramps, etc. -- plus side effects

like

> dizziness, acid reflux, urinary urgency, major runny nose, ringing

in the

> ears.) Finally, at a dose of 60 mg, I decided it wasn't the right

medicine

> for me. I weaned myself off of it and my neurologist had me try

Zanaflex.

> I'm currently at 4 mg -- and doing as well as I ever did on the

baclofen

> without the side effects. There is still some muscle stiffness

especially

> when I get to hurrying or feeling stressed, so I might need to

increase it

> some more -- but will wait until my next checkup in June and see

what the

> neurologist says.

>

> My husband has to do all of the housework (cleaning, cooking,

washing, etc.)

> He's very supportive and I don't know what I would do without him.

So, I try

> to give him as much free time as possible to enjoy his hobbies and

be by

> himself for a while. With my extreme reflexes, it's no longer a

good idea

> for me to prepare a meal or even try to drive a car. Imagine

trying to slice

> an apple -- and the phone rings. I know what happens when driving

and

> someone honks their horn -- I jerked the wheel so violently I

nearly ran off

> the road. Soon after that I gave up driving. I'd sure hate to be

the cause

> of an accident that someone got hurt in.

>

> I gave up trying to cook when I was stirring a pot of soup on the

stove and

> the doorbell rang -- what a mess I had to clean up (soup all over

the kitchen

> floor, stove, counters, cabinets, my walker, and me!)

>

> Live, learn, adjust, adapt, accept. That's what these 4 years have

been

> like, and I expect that's what in store for my future as well.

>

> Anyway, I'm very glad to learn about the PLS-Friends e-mail group

and I hope

> you will accept me into your fold.

>

> Your new friend, Lyndal

[Guest guest]

Patsy,

Welcome to the site. Sorry I didn't wecome you earlier, but my son is

in sports and practices. Taking him when I have to is very tiring and I

am unable to sit and read, let alone look at the computer. I tried last

night, but fell asleep. That is one of the things we PLSer's seem to have

in common: Easily fatigued. About the progression of PLS to the upper limbs,

if you have had the symptoms for nine years and it has not progressed to

the upper body yet, don't worry about. That worry may actually put the

thought in your mind to do it and you will always be looking for symptoms.

It may move up, but the chances now are probably not, or at least not for

a long time.

If you go to the PLS eCommunity website, you will be able to look over

the digests of previous discussions of symptoms and how we have all been

affected. Each of us has a different story, but there are a lot of similarities

among some of us. The spasticity is one. I imagine you are on medication

for this. The off balance feeling is another. Falls are common.If they

occur too often, it is best to get a walking aid, such as a walker. If

you feel you need one, ask the group for advice and you will receive plenty

of it. That is one thing this site is very good for: support and advice.

We also exchange information about advances in medicine which may

affect us and any new symptoms we notice in ourselves. Any topic

is open for discussion since PLS is a rare disease and very few neurologists

know much about it, although it appears some are learning and are willing

to learn.

Again, welcome. And don't open any attachments from me unless I ask

you to in my message.

Mike Gray

theromers@... wrote:

Hi everyone, I have just found this website

and also just had my

diagnosis of PLS. I was diagnosed nine years ago at age 56

with MS.

I found through the years that I didn't have many of the symptoms

of

MS but did have foot drop, a spastic way of walking, and slight

balance problem. Now that I have been diagnosed with PLS

I find I do

have all of the symptoms. I have questions, of course.

My

neurologist thinks this will remain in my lower limbs but the info

on

the computer suggests otherwise. I guess what I would like

(to start

with) is conversation about how it has affected others. I was

delighted to find this website! Thanks for listening....Patsy

Romer

[Guest guest]

Lyndal,

Welcome to the group! I can empathize with your exaggerated reflex responses.

I have had popcorn all over the kitchen with me on the floor, coffee all

over me and the area around me, and have fallen many times because of it.

I was placed on Klonopin (clonazepam) to help control it and it helps.

Maybe you can check this out with your neurologist when you return. I was

diagnosed in May '96 also, but had been having symptoms that were noticeable

since at least June '94. The first two neurologists I saw told me that

it was all in my head. The first one diagnosed me with Conversion Disorder,

a psychiatric diagnosis. The second agreed with this and, because of other

problems, made me agree to see a psychiatrist. I already knew that the

diagnosis was wrong since I am mental health counselor with a background

in clinical psychology. (The first neurologist's eyes got larger and he

left the room when I told him what my profession was and I disagreed with

him. Haven't seen him since and won't. He used to work for my current neurologist,

but was fired. The reasons have been hinted but not made explicit.) The

psychiatrist confirmed what I already knew and he was the one who started

me on Klonopin. My current neurologist said he would have done that first,

also. I take Baclofen and Zanaflex. With this combination, I can walk rather

well and carry my walker a lot. Makes some people stare and my coworkers

started laughing the first time they saw it. I can walk around the house

and the office area without my walker. I'm 51 until the 14th, so I've carried

the diagnosis for 4 years. Indiana is home. Baclofen does not seem to have

any side effects for me, but I had acid reflux before starting the med.

It is worse now, but I have gained some weight and that contributes to

the problem. So far, all that's affected definitely is my lower extremeties,

especially the left.I have begun to notice some problems writing, especially

when I am under stress. Infections also make my symptoms worse. One good

way of knowing I have an infection and need to see my doctor.

That's a brief history. Several others will tell you theirs, I'm sure.

We all have a story (several) to tell. Some are horror stories that end

okay, others are good stories.

Again, welcome, Mike Gray

LyndalGBrown@... wrote:

Hello everyone.

I'm new to the list so thought I'd introduce myself. My name

is Lyndal, I'm

49 years old, I'm female (might be hard to tell from the name),

I'm married,

I live in Cedaredge, Colorado (on the western slope of the Rockies),

and I've

had PLS since May 1996 (4 long years).

PLS affected my speech first. For about 1 week I had extreme

problems

enunciating sentences because my tongue felt thick in my mouth,

and I had

trouble with certain consonant sounds -- I would slur them, then

it got

better again -- but I had to practice pronouncing the words I had

trouble

with. A few weeks later I started getting out of breath after

climbing the

stairs at work, and then I had a few totally unexpected falls.

I went to the

doctor who sent me to a neurologist who said it might be MS.

So, I had an

MRI which didn't show a thing, and the neurologist said wait and

see. By the

next year I was falling frequently, having trouble with stiffness

in my legs,

and felt unsafe using the stairs. I went back to the neurologist,

who sent

me to get another MRI, gave me a spinal tap, and scratched his

head in wonder

because he had no idea -- as these results were also negative.

He sent me to

University Hospital in Denver where I was diagnosed with PLS in

September

1997.

I let the people at work know about my disabling condition and they

immediately moved me downstairs -- however the computer system

I was

responsible for was upstairs. My legs continued to weaken,

my balance

worsened, and I continued to have falls at work. I started

noticing weakness

in my grip, my manual dexterity was affected, my reflexes were

becoming super

sensitive, and I often dropped things. I had to give up more

and more of my

duties and responsibilities during the next 9 months until July

1998 when I

finally couldn't continue working, and retired on disability.

For the past year and a half I have been using (more like dependent

on) a 4

wheel walker. And recently I started using ankle/foot orthotics

on both legs

-- I'm not sure if I'm going to like them in the hot, summer weather.

My

arms and hands have become weaker as well. I have trouble

writing a check

without losing my grip on the pen at least 3 times during the process.

My

speech has worsened, but more slowly. I hate to talk on the

phone because

others have trouble understanding me.

I was on baclofen but it didn't seem to help much. The more

I'd take, the

worse I felt (stiffness, aches, cramps, etc. -- plus side effects

like

dizziness, acid reflux, urinary urgency, major runny nose, ringing

in the

ears.) Finally, at a dose of 60 mg, I decided it wasn't the

right medicine

for me. I weaned myself off of it and my neurologist had

me try Zanaflex.

I'm currently at 4 mg -- and doing as well as I ever did on the

baclofen

without the side effects. There is still some muscle stiffness

especially

when I get to hurrying or feeling stressed, so I might need to

increase it

some more -- but will wait until my next checkup in June and see

what the

neurologist says.

My husband has to do all of the housework (cleaning, cooking, washing,

etc.)

He's very supportive and I don't know what I would do without him.

So, I try

to give him as much free time as possible to enjoy his hobbies

and be by

himself for a while. With my extreme reflexes, it's no longer

a good idea

for me to prepare a meal or even try to drive a car. Imagine

trying to slice

an apple -- and the phone rings. I know what happens when

driving and

someone honks their horn -- I jerked the wheel so violently I nearly

ran off

the road. Soon after that I gave up driving. I'd sure

hate to be the cause

of an accident that someone got hurt in.

I gave up trying to cook when I was stirring a pot of soup on the

stove and

the doorbell rang -- what a mess I had to clean up (soup all over

the kitchen

floor, stove, counters, cabinets, my walker, and me!)

Live, learn, adjust, adapt, accept. That's what these 4 years

have been

like, and I expect that's what in store for my future as well.

Anyway, I'm very glad to learn about the PLS-Friends e-mail group

and I hope

you will accept me into your fold.

Your new friend,

Lyndal

[Guest guest]

HI,

Welcome to the list! If you look at the links at the bottom of this

message, and click on the one to the Files Section, you'll find a Folder of

Frequently Asked for Recipes. Both the Atkins Roll recipe and the Cheese

Danish recipes are there.

Good luck and let us know a bit more about you when you can!

Terry

[Guest guest]

HI Mandy,

glad you found us. I'm new here myself. congrats on the great

workouts!!! I am just starting to move now that my food plan is

working. I just got a pedometer so I hope walking will really help.

I'm 37, single and at 297. I wish you the best of luck on your plan.

Keep us updated on your progress...take care, Ramona

> Hi everyone i hope you all have room for 1 more in this group. My

> name is mandy ive been working out faithfully for the last 2 weeks

so

> i'm still new to my diet and excersise. However i'm very dedicated

> this time to losing weight. Ive been doing cardio and weight

training

> for tone. I'm at my highest ever of 253lbs i'm 5'10 and i'm 25 yrs

> old. So far in the two weeks i have been working out i noticed the

> amount of energy i seem to have after i work out is tremendous and

i

> feel exellent. I have 2 children my oldest is 5 my youngest is 15

> months. I have to be honest with my oldest son i gained about 80

lbs

> which i never lost unfortunately. Anyway i hope to make good

friends

> and hear everyone elses weight loss journeys.

>

> Mandy

[Guest guest]

Hello,

My name is Debbie and i sure am glad to find you people...Try to

make this short...I went to the Doctor this past Tuesday with a

stomach problem (ulcer i think, totally unrelated) while i was there

decided i should probably tell the doc about a lump i have had in my

neck for a really long time and just ignored, i know, i waited..just

one of those people good at taking care of everybody else

first...anyway...he seemed to lose his sense of humor when he felt

this lump and ordered blood work, and yesterday i had an ultrasound

done..Now i wait...Tuesday i find out if in fact it is my

thyroid..and i am not ashamed to admit i am scared to death..Really

though from what little i have so far read on thyroid problems i do

have methods of treatment if that turns out to be the case...I have

read some of the symptoms and i have to say some of them i have...I

guess i just never realised some of these things were related to the

thyroid...figured i was getting old (44 in 2 weeks)....I guess my

question is, well i guess i don't have a question...just worried and

glad to see there are people out there in the same boat...No i do

have one question...for anyone who has a lump or growth or whatever

it is, when you begin taking meds for the problem does the lump go

away??? And is your lump painful at all??? This has never caused me

any pain or discomfort..probably would have made me go sooner if it

had...Also, is there a list of symptoms?, like you have 10 out of 30

so it must be your thyroid?? Sure hope the name on this room is

Thyroid 101 cause i am totally lost..So any and all things to read on

this are also appreciated...Things so much..Debbie (wishing Tuesday

would get here FAST)Sorry...guess i did have some questions after

all....

[Guest guest]

Hi Debbie,

No worries, Newbies are welcome here.

The lump, if it's thyroid,is called a goiter. It could be from a bunch of

different things, so it's best to see what the tests show... We're hoping

that the doc takes the correct tests, unfortunately some aren't as well

versed in proper thyroid care and so take the wrong ones. Your's seems to

be on the ball, he reacted quickly in checking things out.

Stomach problems can also be related to hypo so that may not be a

separate issue.

When you see him on Tuesday, don't be bashful, take notes, we'll help you

to 'translate' what he says into terms that you can understand more

easily. Be sure to get your test results - the labs. We need to know your

lab values and the lab's ranges. That will give us the info that we need

to help you understand where you're at.

If he starts talking about medications, ask him if he's open to

prescribing Natural Thyroid, the biggest brand name is Armour. You can

take notes in with you, too. So that you don't miss any questions that

you may want to ask.

The thyroid controls all the glands of the body so the list of symptoms

of thyroid disorder is LONG... and crosses over to a lot of other things

too.

A couple of things that you can do while you wait for Tuesday, for

curiosity... check your pulse rate while you are quietly sitting at the

computer... Also check how many breathes you take a minute, while quietly

sitting at your computer....

We're here for ya, you're not alone.

Now, not to scare you or anything.. but to give you a bit of knowledge

ahead of time so you can ponder stuff before you see the doc.

Assuming that you are hypo (underactive thyroid), the blood tests are

going to show the amount of hormone in the body. Hopefully he has run

more than just one test. There are three that are very important to run

every time they do your labs and a fourth that is pretty important to run

this first time...

TSH - Thyroid Stimulating Hormone. This is the hormone that is sent out

by the pituitary gland to tell the thyroid to increase or decrease

production. If the number is low, that means that the thyroid can cut

production. If the number is high then the thyroid needs to increase

production. They use this particular test a lot to see what's going on..

it's a rough guide.

Free T4 - A thyroid storage hormone. It is the second most 'popular' test

by docs. It tells how much is in the blood stream ready to be converted

and used by the body. It builds up in the body tissues over a period of 4

to 6 weeks.

Free T3 - The most active thyroid hormone. It's what you get when the

body takes a T4 and removes an Iodine molecule from it to make it into a

T3 the hormone, the one that is directly used by most of our body organs

and tissues. It's life span is short, only a few hours. So it's important

to know if your body is good at converting. There are supplements,

vitamins and minerals, that can help with that.

Antibody test.. To check for thyroid antibodies. A common cause of

hypothyroid is a condition called Hashimoto's Thyroiditis... several of

the folks here on the list have it. So plenty of folks to help if that's

the case.

An enlarged thyroid, the swelling, is most often a sign of underactive

thyroid - Hypothyroid. but can also be a sign of overactive thyroid -

Hyperthyroid. So we pretty much have to see what the labs show.

I was a long term low grade hyper, then went into thyroid storm (when the

thyroid just goes crazy and puts out all kinds of hormone, speeding up

the body). I had RAI to destroy my thyroid, so now mine doesn't work at

all. I took synthetic thyroid (most common brand name is Synthroid) for

10 years and kept getting worse and worse on it... and just over a year

and a half ago started on Natural thyroid and learning about what

vitamins and minerals help my body... so today... I'm feeling TONS BETTER

that I did for years.

Now... rules of the board... If you have a question, ask. Someone here

will have an answer or can get pointed in the right direction to find

one...

If you don't understand what someone says, please, ask us to clarify so

that you understand.

If you post a message and no one responds in a day or so, post again,

sometimes messages get lost and sometimes folks get so busy they might

miss it.... so if you get no responses in a day.... post again.

And if your just really frustrated and need to blow some steam... we're

here for that too, okay?

Topper ()

On Sat, 06 Mar 2004 03:16:31 -0000 " ladywyldfyre "

writes:

> Hello,

> My name is Debbie and i sure am glad to find you people...Try to

> make this short...I went to the Doctor this past Tuesday with a

> stomach problem (ulcer i think, totally unrelated) while i was there

> decided i should probably tell the doc about a lump i have had in my

> neck for a really long time and just ignored, i know, i waited..just

> one of those people good at taking care of everybody else

> first...anyway...he seemed to lose his sense of humor when he felt

> this lump and ordered blood work, and yesterday i had an ultrasound

> done..Now i wait...Tuesday i find out if in fact it is my

> thyroid..and i am not ashamed to admit i am scared to death..Really

> though from what little i have so far read on thyroid problems i do

> have methods of treatment if that turns out to be the case...I have

> read some of the symptoms and i have to say some of them i have...I

> guess i just never realised some of these things were related to the

> thyroid...figured i was getting old (44 in 2 weeks)....I guess my

> question is, well i guess i don't have a question...just worried and

> glad to see there are people out there in the same boat...No i do

> have one question...for anyone who has a lump or growth or whatever

> it is, when you begin taking meds for the problem does the lump go

> away??? And is your lump painful at all??? This has never caused me

> any pain or discomfort..probably would have made me go sooner if it

> had...Also, is there a list of symptoms?, like you have 10 out of 30

> so it must be your thyroid?? Sure hope the name on this room is

> Thyroid 101 cause i am totally lost..So any and all things to read

> on

> this are also appreciated...Things so much..Debbie (wishing Tuesday

> would get here FAST)Sorry...guess i did have some questions after

> all....