Re: (unknown)

March 31, 2002

Hi Peg: happy easter! I feel bad for your pain. Is it any better today? I heard

that statement about the pain being like arthritis in your muscles and I have

been using it since to describe to others what this disease is like. It makes it

easier for them to understand. I went for lots of blood testing last week and

the dr's office called, wants to see me this week. I am in the middle of trying

to get a fibro diagnosis. Hope he just doesn't say, oh you have high

cholesterol, or oh you need some iron. This has been plaguing me for all of my

adult life, since my first baby, and she is 33 now. But on the bright side, I

finally got some sleep last night, 8 whole hours! I cannot tell you how that

feels, or how rare that is. But you probably understand! Feel better, Peg! Hugs

coming your way. Ellie

(unknown)

Hi All,

Hope everyone is well. Fiance did something to the PC so I've been to

aggravated to fix. I had mentioned pain that I was experiencing in my inner

knees, lower and mid back, pain that I hadn't had before. The neuro that

diagnosed the FM said that pain in these areas are not common to FM. It's funny

because I went to Borders (book store) and spent several hours reading (didn't

hav $ to buy) those areas are common to FM. I called the PCP office on Friday

morning at 8:30 for help with the migrain, Imitrex and compazine not helping,no

appts available, no call back until 4:00 pm. Advice was to come in tomorrow. I

had to take the youngest into Boston for his infusion, was trying to get migrain

under control before appt.I swear no-one knows what they are doing. My PCP

refered me to the Rheumatologist that sent me to the Neuro who sent me back to

the PCP. Sounds like a bad Country song. (no offense I like Country) The nurse

who infuses my son asked me what was wrong, and I told her about the Fibro, she

said,

" FM's like having arthritis in your muscles. "

That is the most logical statement anyone has made yet! Hope you all have a

great weekend. Peg

---------------------------------

March 31, 2002

LaRue wrote:

>

> Well, I went to the urologist yesterday (they

> rescheduled my appointment) and after a few minutes of

> questions and an examination of pressing on all the

> sore spots! he is scheduling me in to test for IC. I

> have to wait 5 months for a time in the hospital. Has

> anyone had their bladder stretched and filled with

> water with a tube going through their urethra

> (spelling:) ). I must say, it sounds quite painful.

This should be done while you are under anesthesia. I had it done, and

the only thing I noticed (since I was under when they did it) was for

maybe the next week or two, it was kind of painful to pee. It wasn't

constant nor the whole time I was peeing, and it went away.

Darcy

April 2, 2002

audie5us wrote:

>

> Hi I'm new to this group, but not to fibromyalgia, I have had this

> for a few years and finding out that it doesn't get any better and I

> think it getting worse,does anyone have anything new to try for

> this.

Hi Audie,

welcome to the group. If you tell us what you've tried, and what

symptom you're trying to help, we'll be better at giving stuff you

haven't tried yet.

Darcy

April 8, 2002

Welcome, . Ellie

(unknown)

These my answers:

Age range:35-40

Male/female: female

What are the symptoms? I have severe pain in shoulder blades and ache all

over. Also I get alot of brain fog.

Has you illness been diagnosed? by Dr. Usmani a rheaumatologist

How long did you suffer before you got help? years

Is there a time that you can remember when it started? I was diagnosed with

fibrocistis 1984, buy a different rheaumatologist.

Some of us have found lack of exercise we are overweight. Have you

found this to be a problem also? yes and no. I when I was first diagnosed no,

when I was rediagnosed yes.

Are you on disability? yes

If you are any pointers for others trying to get on disability? get as many

doctors and as much documentions you can get.

what have you found that helps ease the pain, warm baths, medications

etc.? ladiocaine patches, injections, Glucosamine-Capsicin gel, Super Blue

Stuff

Do you have sleep problems? How do you deal with it? Yes, I try not to sleep

thru the day and early evening. When really bad I use presciption medication

Do you have family that understands your illness? Yes

Some have found certain foods causes problems with CFS or Fibro, have

you? Not that I have realized

What type of Doctor have you found that has helped you the most?

Rheumatologist.

September 24, 2002

graduate56@... wrote:

>

> Hi all,

> Its me again.

Hi, I think a subject will get more responses

I know what you mean about relief at a diagnosis, by the time I

was diagnosed I'd have been happy with any diagnosis for as long

as they started treating me, and stopped blaming " stress " .

Are you on antithyroid drugs yet?

> I have been reading up on graves since my diagnosis last thurseday.

> I saw somewhere that it can effect your sex drivel.

> But It didn't say how.

Some hyperthyroid people have more interest in sex that other

people. But then they often have more energy, and sleep less,

and are generally more bouncy, at least for a while.

Certainly being a student who could party through the night

(heck I didn't need to sleep some nights, even without a party)

did good things for my social life, and nothing for my studies.

However once the body can't keep up the frantic pace of

hyperthyroidism, most people crash into a sorry state, and sick

people don't generally have much interest in sex. Similarly the

hypothyroid tend to be depressed and lethargic, and that isn't

good for your sex life either.

Some report it makes no difference what so ever.... So if you

haven't notice it yet, you've missed one of the few redeeming

features - actually inappropriate interest in sex isn't always a

redeeming feature, as it can play hell with your relationships.

Hormones is funny things, and it is a revelation for most to

discover just how much we are puppets of our chemistry.

Certainly I've become a lot more tolerant of others

'eccentricies' having been through this.

September 24, 2002

graduate56@... wrote:

>

> Hi all,

> Its me again.

Hi, I think a subject will get more responses

I know what you mean about relief at a diagnosis, by the time I

was diagnosed I'd have been happy with any diagnosis for as long

as they started treating me, and stopped blaming " stress " .

Are you on antithyroid drugs yet?

> I have been reading up on graves since my diagnosis last thurseday.

> I saw somewhere that it can effect your sex drivel.

> But It didn't say how.

Some hyperthyroid people have more interest in sex that other

people. But then they often have more energy, and sleep less,

and are generally more bouncy, at least for a while.

Certainly being a student who could party through the night

(heck I didn't need to sleep some nights, even without a party)

did good things for my social life, and nothing for my studies.

However once the body can't keep up the frantic pace of

hyperthyroidism, most people crash into a sorry state, and sick

people don't generally have much interest in sex. Similarly the

hypothyroid tend to be depressed and lethargic, and that isn't

good for your sex life either.

Some report it makes no difference what so ever.... So if you

haven't notice it yet, you've missed one of the few redeeming

features - actually inappropriate interest in sex isn't always a

redeeming feature, as it can play hell with your relationships.

Hormones is funny things, and it is a revelation for most to

discover just how much we are puppets of our chemistry.

Certainly I've become a lot more tolerant of others

'eccentricies' having been through this.

September 24, 2002

Simon said:

Hormones is funny things, and it is a revelation for most to

discover just how much we are puppets of our chemistry.

Certainly I've become a lot more tolerant of others

'eccentricies' having been through this

Yes, Simon, I hadn't thought of that but it's true I think. Maybe we should

add that to the silver lining list. I think I've developed more patience as

a result of this too... that was always a life long struggle for me.

To the new person with no name or subject line, welcome!

Yes, releif is usually one of the emotions in our mixed bag when diagnosis

finally comes. My overriding emtotion was terror - I thought I was going to

die and had to get my life in order. But that's not the case, and as far as

autoimmune diseases, this one can be much easier to live with than others,

as long as you become active in your care and especially if you can reach

remission.

You might want to read this letter for people newly diagnosed with GD.

http://www.webmosaics.com/thyroid/letter.htm

Let us know when you have questions!

Pam B.

September 24, 2002

Simon said:

Hormones is funny things, and it is a revelation for most to

discover just how much we are puppets of our chemistry.

Certainly I've become a lot more tolerant of others

'eccentricies' having been through this

Yes, Simon, I hadn't thought of that but it's true I think. Maybe we should

add that to the silver lining list. I think I've developed more patience as

a result of this too... that was always a life long struggle for me.

To the new person with no name or subject line, welcome!

Yes, releif is usually one of the emotions in our mixed bag when diagnosis

finally comes. My overriding emtotion was terror - I thought I was going to

die and had to get my life in order. But that's not the case, and as far as

autoimmune diseases, this one can be much easier to live with than others,

as long as you become active in your care and especially if you can reach

remission.

You might want to read this letter for people newly diagnosed with GD.

http://www.webmosaics.com/thyroid/letter.htm

Let us know when you have questions!

Pam B.

September 24, 2002

Simon said:

Hormones is funny things, and it is a revelation for most to

discover just how much we are puppets of our chemistry.

Certainly I've become a lot more tolerant of others

'eccentricies' having been through this

Yes, Simon, I hadn't thought of that but it's true I think. Maybe we should

add that to the silver lining list. I think I've developed more patience as

a result of this too... that was always a life long struggle for me.

To the new person with no name or subject line, welcome!

Yes, releif is usually one of the emotions in our mixed bag when diagnosis

finally comes. My overriding emtotion was terror - I thought I was going to

die and had to get my life in order. But that's not the case, and as far as

autoimmune diseases, this one can be much easier to live with than others,

as long as you become active in your care and especially if you can reach

remission.

You might want to read this letter for people newly diagnosed with GD.

http://www.webmosaics.com/thyroid/letter.htm

Let us know when you have questions!

Pam B.

September 30, 2002

Hi Janet:-)

Welcome. First, let yourself mourn the perfect healthy baby it sounds like

this came as a shock to you so I am assuming you did not have a lot of

prenatal testing.

Second: Let us know what is going on and the Magic Foundation has a library

full of great information on RSS. Start reading and educating yourself on

the healthcare terminology as you read these articles. When a doctor says

no or I do not think that pertains to RSS....always ask the question what

would indicate to you ( the doc) that a child had this or that or when would

you test for this or that.

RSS is a little different for every child so in order for us to help your

family we need to know what is going on or concerns you are having and

someone or many of us would have gone through similar things and will have

advice for you.

Things to watch for: Hypoglycemia...From my own experience I do not know

any RSS child that can sleep through the night without getting hypoglycemic.

They do not necessarily let you know they are hungry. My own personal

situation I had to feed my daughter every 2 hours. Get some ketone sticks

at the drug store and put a cotton ball in the diaper and squeeze it out to

test the first morning urine for ketones. If they are present, your child

needs to eat more during the night. The theory is to keep their blood sugar

up and you can avoid learning disabilities that may be caused by nocturnal

hypoglycemia.

Watch for reflux...It doesn't always manifest itself by all out vomiting.

If your baby has it they usually arch their backs and appear to be

swallowing a lot or " chewing their cud "

This should get you started. I do have to run. But we are here to help.

--

Jovanovich

****Please note - our NEW e-mail address

laura@...

Reply-To: RSS-Support

Date: Sat, 28 Sep 2002 04:47:48 -0000

To: RSS-Support

Subject: (unknown)

Resent-From: laura@...

Resent-To: bugwilder@...

Resent-Date: Mon, 30 Sep 2002 08:07:33 -0500

hi everyone im new to this my daughter was just diagnosed with rss

and it was really scary to hear i don't really know much about it but

ilooked at alot of the pics and all the children are so cute i just

would like more parents advice on what to do next email me back

thanks,

Janet

October 2, 2002

Hi Suzee, sorry you hurt your tail bone - I know how bad that hurts! Hope it

heals sooner than mine did.

You said:

....the Endo called and said that she was going to have to re-think my

situation because the uptake was a 1 % scan and she's thinking that

I might just have Thyroiditis. She will re-check blood tests in two

weeks and go from there depending on the results!! YEAH!!!!! She

said, if it is Thyroiditis...I'll go HypO before normal, so be

prepared!

Make sure you ask your endo for some antibody tests so you can rule out

autoimmune thyroid disease. You might just have a viral type of thyroiditis

too, not autoimmune... in which case, once that clears up you will be as

good as new and not be hypo. Hope that is what it is for you.

Take care and let us know what you find out,

Pam B.

October 2, 2002

Suzee -

Glad you had a fun trip, but sorry about the tailbone! Ouch! Mine hurts just

thinking about it! Hope it heals quickly!

(unknown)

> Hi Everyone...

> I'm back!!! I got back Sunday late afternoon but couldn't get

> online. Gimme a minute and I'll tell you why....I'll start from the

> beginning.

>

> Manda had a volley-ball game Thursday afternoon. My dad came here

> from Seattle and watched her game...we headed to Spokane, WA. from

> there. We got there fairly late, got a room, had dinner and crashed

> for the night. The next morning, we went to this SUPER DUPER HUGE

> mall and shopped forever for Manda's Birthday. Went to a video

> arcade and had a blast. Then, we headed for Idaho. On our way...the

> Endo called and said that she was going to have to re-think my

> situation because the uptake was a 1 % scan and she's thinking that

> I might just have Thyroiditis. She will re-check blood tests in two

> weeks and go from there depending on the results!! YEAH!!!!! She

> said, if it is Thyroiditis...I'll go HypO before normal, so be

> prepared!

>

> THEN....we got to Idaho and got a Motel room with hottub and pool.

> Bummed around and looked around. Went to Red Lobster for dinner and

> bought some underwear looking things for hot-tub wear, since we

> forgot our suits. On our way back to the Motel, we saw a

> rollerskating rink. OHhHHHHHHH.....FUN...so we stopped. Said, we

> would skate for an hour only, so we could make it back to the motel

> before the hot-tub closed. On our last lap....we were racing...I was

> trying to lap my Dad. Well, let's just say...I lost. My feet went

> forward and I went straight down on my BUTT!!!! They stopped the

> song, turned on the lights and carried me off of the floor.

>

> I hurt soooo bad!!!!!

>

> The next morning we went to Silverwood. We had a wonderful time,

> except I was in terrible, unbearable pain! But...for my

> daughter....I made it through. We spent one more night and headed

> home, where I had to lay the seat back in the car and lay on my side,

> cuz I couldn't sit on my butt it hurt soo bad.

>

> Monday morning, (since I hadn't slept since Friday night)...I headed

> to the Doctor's office. There I found out that I shattered my tail

> bone. The last three bones are totally, in pieces. JUST MY LUCK,

> I'LL TELL YOU NOW!!!! Do you believe it?!

>

> So, here I sit (on a toilet seat, ring pillow) on major pain

> medications and muscle relaxers. Not to mention two meds to make me

> go to the bathroom, since those muscles down there aren't working

> correctly!! LOL....I'm a mess!!! I'll read and get caught up with

> everything as soon as I can! It's hard to sit for long periods of

> time cuz...MY BUTT HURTS and I'm very, very tired. Hope to hear from

> anyone soon!!! **Shattered Butt Suzee**

>

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

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

------------

>

October 2, 2002

Suzee,

Here's praying for a speedy recovery. Ouch, it hurts just thinking about

it.

Debbie R.

October 2, 2002

Suzee,

Here's praying for a speedy recovery. Ouch, it hurts just thinking about

it.

Debbie R.

October 2, 2002

Suzee,

Here's praying for a speedy recovery. Ouch, it hurts just thinking about

it.

Debbie R.

October 3, 2002

Hi Janet!

My name is Pat and I'm the grandmother of . It was really scary to

find out that had RSS, mostly because I didn't know what it was.

Researching it really helped, and just living it day to day and figuring out

that B is normal for the most part has helped tons!

is 9 months old now. He weighs in at 3.715kg and is 22.5inches long,

basically the size of a newborn. He just got a G tube placed on Sept.10th, so

hopefully he'll start to get bigger! His care is a little more specialized than

a normal baby, and feeding him used to be an act for developing patience, but

day to day, looking back it doesn't seem as hard as it did then. PT has just

become a normal part of his play, we seem to do his movements without even

thinking about it now. The baby massage we've been doing for months, has just

become a normal part of lotioning him after his bath. A few months ago I would

have to refer to an instruction sheet just to get it right and not forget steps!

LOL I guess it just becomes " normal " for you and your baby.

The best advice I could give you would be to take it one day at a time.

Enjoy your daughter for who she is, RSS and all, and deal with the problems as

they arrive. I've been trying to take things one at a time, solve one problem,

then move onto the next, and for me it makes the situation less intimidating.

Come here often! It was here, on this site, that I really learned that we're not

all alone in this, and these people will do anything they can to help you

through any problems that arise. Here you can talk about weight problems and

feeding problems, and pyloriplasties and fundoplications and g tubes and they

understand and offer any and all advice that they think might help to make it

easier for you. Sometimes the general public and even families just can't

understand! They get into this " if only " game, if only you would feed more, if

only you did this or that more, and they make you feel like you're just not

doing enough, when inside you're tearing your hair out trying to think of

something you haven't tried! Here, life with an RSS child IS normal! LOL

Empower yourself! Read, ask questions, research! The more you know about

something the less scary it becomes. The better you can communicate with the

drs, the more help you'll be to your daughter. I am far from an expert, and

we've only been handling this situation for about 6 months, but if there is ever

anything I can do, or a question that I can answer, don't hesitate to ask!

The best to you and your daughter! And god bless!

Pat (g-ma to

October 5, 2002

Hey Janet!

I was wondering where Hollsopple, penn is. We live on the north coast of

Ohio, about a block from Lake Erie acttually. Pennsylvania isn't all that far

away.

Pat

October 17, 2002

Hi -

Yes, definitely Graves' can affect your cycle!

Let's see if I can get this right again. If your hyper, it can cause your

periods to be more frequent and lighter. If you're more towards hypo, then

your periods can be farther apart and heavier. However, it's not just the

current level that you're at that can affect it, but the direction that

you're going. For example, when I was hyper, my periods can more fequently,

but as the levels went down to the normal level, the body interpretted that

as a move towards the hypo end of the scale, so my periods became farther

apart. So even though the lab tests showed " normal " levels, the body felt

like it was " hypo " . Does that make sense? Same is true of the reverse.

The other thing with menstrual cycles is that your thyroid levels can be

slightly higher right before your period comes, and then go down after the

arrival of your period. {This is a good thing to keep in mind when you're

scheduling your lab tests.) So many of us feel more " hyper " symptoms right

before our period - even if our levels are normal. It has to do with the

" female " hormone levels, they have an affect on the thyroid hormones as

well. So don't worry, you're not weird! This is all very common stuff!

(unknown)

> Hi all,

> I have a question.

> For the women on this list.

> Do you notice a diference with your menstrual cycle because of this

> disease.

> Just curious.

> I'm also making sure that I'm not a little weird.

> For me, it seems as though my hyper symptoms increase. Along with

> nausia, insomnia, and diarrhea, and other symptoms. These other symptoms

> are probably just related to me.

> Take care all.

> Look forward to hearing from you.

>

> diagnosed with graves

> 9/19/2002

>

> ________________________________________________________________

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

> The Graves' list is intended for informational purposes only and is not

intended to replace expert medical care.

> Please consult your doctor before changing or trying new treatments.

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

> DISCLAIMER

>

> Advertisments placed on this yahoo groups list do not have the endorsement

of

> the listowner. I have no input as to what ads are attached to emails.

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

------------

>

October 17, 2002