Newly Diagnosed

July 19, 2005

Welcome, ! Sorry you're in so much pain.

Unfortunately, yes, family members and friends often don't understand or are

in denial or in shock and say annoying things.

a, our list owner and lead moderator, has created a Web site

(http://rheumatoid.arthritis.freehosting.net/)

full of useful information. Scleroderma information is included.

Why is scleroderma suspected?

It's not unusual to have more than one illness, but some combinations are

more common than others.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Newly diagnosed

>I was diagnosed with RA last week. In the last week I

> have had really bad pain. I was put on Ultram for pain

> control. They are testing me for some other suspected

> illnesses, one being slceroderma. Is it common to have

> more than one type illness ? Any suggestions on where

> to go for info would be appreciated. I also wondered

> if anyone else's family members reacted oddly to the

> fact you have RA ? My son said off hand today, " Well

> I know other people who have arthritis and they do

> alright , you make it sound like you are done and

> can't do anything. " I'm keeping in mind he doesn't

> have a clue to the pain of RA, and I hope he never

> does , but is this a normal reaction ? Thanks for your

> ears..

July 19, 2005

,

Everything you said is normal. I have RA, fibromyalgia, osteoporisis. I went

for dx and I got three at once. I knew that something wasn't quite right, but

that is what I got. ANd I got a second and a third opinion. I just couldn't

believe it. As for the family and friends around you, if they don't have the

disease then it is very difficult for them to relate. The worst battle is

trying to get your family to understand why you are so tired and hurt so much.

Just keep your chin up. THis group is awesome and can answer any questions you

may have. We are all here to help.

Judith Ann

I was diagnosed with RA last week. In the last week I

have had really bad pain. I was put on Ultram for pain

control. They are testing me for some other suspected

illnesses, one being slceroderma. Is it common to have

more than one type illness ? Any suggestions on where

to go for info would be appreciated. I also wondered

if anyone else's family members reacted oddly to the

fact you have RA ? My son said off hand today, " Well

I know other people who have arthritis and they do

alright , you make it sound like you are done and

can't do anything. " I'm keeping in mind he doesn't

have a clue to the pain of RA, and I hope he never

does , but is this a normal reaction ? Thanks for your

ears..

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

July 22, 2005

Hello

Wow, I'm so sorry that you have this crummy disease at such a young age. I

completely understand the " all in your head " business. I developed RA in my

early forties and of course every one just assumed it was menopause. Can you

believe that!!! When I complained of fatigue or pain some would say " oh you're

just

going through the change or you're stressed or whatever. " One doctor even

prescribed hormones when tests showed that I didn't need them. Needless to say I

left that doctor.

This may sound weird but your children are going to be much better human

beings because of having a sick parent. They are learning at a young age what

it means to really help the one who gave them life. Imagine how much more

sensitive and understanding they will be as adults. I can tell that you are a

great mom by the fact that you are concerned about their well being first.

Joining this group is going to help you so much. It's just so reassuring

to read that other's experience the same things and they we all (despite our

diverse situations) manage get through it.

I've learned so much in the short time that I have been a member.

Take Care

Babs

July 23, 2005

Hi,

Wow you are young to get diagnosed, but it happens all the time. I

won my disability a few months ago. I won't tell you it was easy.

However, make sure you give them every single record you have, every

lab test, every x-ray, etc., just bombard them with information.

Also, did you ask your doctor outright to support your disability?

I am sure that having my rheumy in my corner helped me a lot. If

they schedule you an exam with their doctor, make sure you go for

the appt, are on time and try not to reschedule it or anything. I

had the exam with their doctor and he actually turned out to be very

compassionate. He felt bad that I was only 38, but he had a sister

diagnosed with RA at 30 who had to give up her job as a lawyer so he

was very compassionate. I was lucky I know, but just keep trying.

I have been told that going to the hearing without a lawyer is much

harder. Is there any way at all you can afford one? Maybe someone

who will only take a commission if you win? I have heard that from

several people, but it may vary from state to state I am not sure.

Your kids are lucky to still have their mom and there is no

substitute for you. They want you as their mom even if you are

sick. This I have learned the hard way from my three wonderful

children. Like they say, at least I am still here and can cuddle,

listen, read to them, watch a movie, stuff like that. Mostly, I am

just a very good listener for them right now which is what they

really want. They do get angry at the disease because mom cannot

do what she used to, but they are angry at the disease, not me. I

have to remind myself of that sometimes. My hubby is wonderful

about the whole thing thank goodness. I wish you luck. You have

joined the right group. These are wonderful people who are so

supportive. I cannot say enough nice things about all of them.

They are always there for you in times of crisis. Anytime you just

need to vent, feel free to email me. I don't mind at all. I

usually check my mail a couple times a day.

Well, my fingers are screaming as I like to say! Hang in there. It

will get better, not as good as before, but better. It takes longer

than we want sometimes, but it does happen.

Hugs,

Tracie in Maine

> I have not been working for about two years now because of pain

and

> fatigue. I also suffer from migraines and those of you who have

those

> know what a pain in the butt they can be and how they tend to show

up

> more when you are already feeling down. Today, after a couple of

> years of consistently repeating myself, I finally got to see an

> internist/rheumatologist and was officially diagnosed with RA and

> carpal tunnel syndrome in my non-dominant hand. Last year I

applied

> for disability and was denied, this year I'm hoping when I get my

> appeal hearing the RA " label " will help me get SSD. RA and all the

> stuff that comes along with it sux big time,,, but what seems to

make

> everything worse is that I'm only 28 and no matter what I seem to

say

> to people, they don't listen to me. My doctor thought it was all

in

> my head, I had to bring back up people with me to my apts. Finally

I

> complained enough (I used to have a boss who said the squeaky

wheel

> gets the oil) and my GP started running the right tests. The

> Internits/rheumy I saw today was very understanding and instead of

> saying " you're 28, you should be fine " like everyone else does, he

> said " you are a baby, the age of my kids, I really wish you didn't

> have to be here " . It felt nice to maybe not be understood, but not

> looked at like a liar. I'm so tired and really I would like people

to

> say " it'll be ok " but I'll settle for " it won't be this bad

forever " .

> My age seems to be the thing that is killing me, I couldn't get

SSD

> because they said I was so young, nothing is probably wrong with

me,

> I couldn't get legal help to appeal that, because the local legal

> assistance program said that there were older people who needed

their

> help, so i had to appeal alone. Even my family doesn't ask me how

I'm

> doing because they think its all in my head, I'm too young. Thank

god

> for my fiance, if I didn't have him and his belief in me, I

wouldn't

> be able to stand it. I have two beautiful children too, but

sometimes

> I think they'd be better off with someone better than me. I need

> support and as much information as possible on how to win my SSD

> claim, I do deserve it... when I did work I would work 2-3 jobs at

a

> time... I'm so frustrated.. any help would be appreciated. Thank

you.

July 23, 2005

Well, the good news is that you have a diagnosis, and it sounds like

you have a rheumatologist who not only believes you, but cares. You

have no idea how rare that seems to be.

As for the " too young " bull....at 24 I complained to my doctor (I

had Kaiser, then) that I had palpations and other strange sensations

in my chest, including chest pain and dizziness/feeling like I was

going to faint. He said I was too young for heart disease, even

though my father died at 52, and my mother had a silent, minor heart

attack at 35. At 33 I had surgery to correct an arrhythmia I had

lived with for nearly 10 years, after a doctor FINALLY listened to

me and didn't brush it off as either hysterical or a hypochondriac.

My brother had just died from a previously undiagnosed arrhythmia,

and I was determined to find out what was wrong. By that time it had

become so severe I was nearly bedridden. I learned from that

experience not to give up, especially if you know something is

wrong. That has helped me with my current problems....if I hadn't

learned this lesson, I'd probably believe these dopes when they told

me that I just " needed more sleep " and that the pain was due to

depression.

Hopefully they can get you on the right meds, now, and prevent most,

if not all, damage from this point on. You are young, but use that

to your advantage. I, too, am used to always being on the go. I

work in publishing, and often put in 18-20 hour days for months on

end. I actually enjoyed it. I also have horses, and used to ride 8-

10 hours a day on my days off, and rode a couple of hours a day when

I worked. I just started working again after 2 years off, and I can

barely get in a 40 hour week....I'm exhausted and in agony by the

weekend, and haven't done more than feed the horses in well over a

year. It is frustrating, and you feel so useless when all you can

really do is lie on the couch and stare at the tv (if you are lucky).

> I have not been working for about two years now because of pain

and

> fatigue. I also suffer from migraines and those of you who have

those

> know what a pain in the butt they can be and how they tend to show

up

> more when you are already feeling down. Today, after a couple of

> years of consistently repeating myself, I finally got to see an

> internist/rheumatologist and was officially diagnosed with RA and

> carpal tunnel syndrome in my non-dominant hand. Last year I

applied

> for disability and was denied, this year I'm hoping when I get my

> appeal hearing the RA " label " will help me get SSD. RA and all the

> stuff that comes along with it sux big time,,, but what seems to

make

> everything worse is that I'm only 28 and no matter what I seem to

say

> to people, they don't listen to me. My doctor thought it was all

in

> my head, I had to bring back up people with me to my apts. Finally

I

> complained enough (I used to have a boss who said the squeaky

wheel

> gets the oil) and my GP started running the right tests. The

> Internits/rheumy I saw today was very understanding and instead of

> saying " you're 28, you should be fine " like everyone else does, he

> said " you are a baby, the age of my kids, I really wish you didn't

> have to be here " . It felt nice to maybe not be understood, but not

> looked at like a liar. I'm so tired and really I would like people

to

> say " it'll be ok " but I'll settle for " it won't be this bad

forever " .

> My age seems to be the thing that is killing me, I couldn't get

SSD

> because they said I was so young, nothing is probably wrong with

me,

> I couldn't get legal help to appeal that, because the local legal

> assistance program said that there were older people who needed

their

> help, so i had to appeal alone. Even my family doesn't ask me how

I'm

> doing because they think its all in my head, I'm too young. Thank

god

> for my fiance, if I didn't have him and his belief in me, I

wouldn't

> be able to stand it. I have two beautiful children too, but

sometimes

> I think they'd be better off with someone better than me. I need

> support and as much information as possible on how to win my SSD

> claim, I do deserve it... when I did work I would work 2-3 jobs at

a

> time... I'm so frustrated.. any help would be appreciated. Thank

you.

April 28, 2006

Hi Darlene,

You have come to the right place. I am sorry for your dx of RA, but

glad you found a wonderful rheumy. I also have liver problems, and

only on Plaquenil for the RA. Does the fish oil capsules work? I am

looking forward to getting to know you. If you would like to email

me anytime feel free, I would love to hear from you.

A big welcome hug, Tawny

--- In , " Darlene Ashcraft " <luvtoknit@...>

wrote:

>

> Hi everyone,

> My name is Darlene, 50, from Ohio. I was diagnosed with rheumatoid

arthritis

> yesterday. I have suspected it for 2 years when I had an elevated

rheumatoid

> factor with another doctor. I switched docs and it was high again

so she

> sent me to a rheumy. I love my rheumatologist! She is wonderful. I

have some

> other health issues and they are especially concerned about my

liver damage.

> So she started me on Plaquenil and fish oil capsules for now.

>

> I've done some reading on RA since I have thought I had it all

along. But I

> need a place where I can find support and info from others who have

it.

> Thanks for letting me join!

>

> Hugs,

> Darlene

>

April 28, 2006

Hi Darlene, You came to a great place for support! Feel free to vent and ask

questions, the people here are very knowledgable. I'm glad you have a rheumy

that you love and that has started you on treatment. You work very closely to

your rheumy so it helps when you have a good one. Best wishes,

Holly, 26, RA, Lupus,

Fibromyalgia, and CFD

Darlene Ashcraft <luvtoknit@...> wrote: Hi everyone,

My name is Darlene, 50, from Ohio. I was diagnosed with rheumatoid arthritis

yesterday. I have suspected it for 2 years when I had an elevated rheumatoid

factor with another doctor. I switched docs and it was high again so she

sent me to a rheumy. I love my rheumatologist! She is wonderful. I have some

other health issues and they are especially concerned about my liver damage.

So she started me on Plaquenil and fish oil capsules for now.

I've done some reading on RA since I have thought I had it all along. But I

need a place where I can find support and info from others who have it.

Thanks for letting me join!

Hugs,

Darlene

April 28, 2006

Hi Darlene:

Welcome to the group! You will find a lot of very

caring and supportive people here, and great

information from our moderators, and a, who

are the best!

I am 52, and have had my dx of RA for 7 years. When I

was first dx, I was put on Plaquenil too, because it

is the DMARD with the least amount of liver side

effects. I was on it for 2-1/2 years before it began

not working as well, and I had to be switched to other

meds. I had no side effects or any problems with the

Plaquenil. Just remember to get your eyes checked on

a regular basis for the very rare side effect of

retinal damage. Fish oil is very good for

inflammation, and I also take Milk Thistle for extra

liver protection.

I am very glad to hear that you have been able to find

a doctor whom you like and who is doing her best to

treat your RA. Early aggressive treatment with DMARDs

is a must with RA, and she is doing that with

Plaquenil. I wish you the best with the medication,

and hope it works as well for as it worked for me.

Kathe in CA

--- Darlene Ashcraft <luvtoknit@...> wrote:

> Hi everyone,

> My name is Darlene, 50, from Ohio. I was diagnosed

> with rheumatoid arthritis

> yesterday. I have suspected it for 2 years when I

> had an elevated rheumatoid

> factor with another doctor. I switched docs and it

> was high again so she

> sent me to a rheumy. I love my rheumatologist! She

> is wonderful. I have some

> other health issues and they are especially

> concerned about my liver damage.

> So she started me on Plaquenil and fish oil capsules

> for now.

>

> I've done some reading on RA since I have thought I

> had it all along. But I

> need a place where I can find support and info from

> others who have it.

> Thanks for letting me join!

>

> Hugs,

> Darlene

>

> [Non-text portions of this message have been

> removed]

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

April 28, 2006

Welcome, Darlene!

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] newly diagnosed

> Hi everyone,

> My name is Darlene, 50, from Ohio. I was diagnosed with rheumatoid

> arthritis

> yesterday. I have suspected it for 2 years when I had an elevated

> rheumatoid

> factor with another doctor. I switched docs and it was high again so she

> sent me to a rheumy. I love my rheumatologist! She is wonderful. I have

> some

> other health issues and they are especially concerned about my liver

> damage.

> So she started me on Plaquenil and fish oil capsules for now.

>

> I've done some reading on RA since I have thought I had it all along. But

> I

> need a place where I can find support and info from others who have it.

> Thanks for letting me join!

>

> Hugs,

> Darlene

April 28, 2006

Thanks for the welcome !

Darlene

-- Re: [ ] newly diagnosed

Welcome, Darlene!

Not an MD

April 28, 2006

Thanks for the welcome Kathie! Your info is very helpful. I didn't know

that milk thistle was good for the liver. I might try that too.

Hugs,

Darlene

-- Re: [ ] newly diagnosed

Hi Darlene:

Welcome to the group! You will find a lot of very

caring and supportive people here, and great

information from our moderators, and a, who

are the best!

I am 52, and have had my dx of RA for 7 years. When I

was first dx, I was put on Plaquenil too, because it

is the DMARD with the least amount of liver side

effects. I was on it for 2-1/2 years before it began

not working as well, and I had to be switched to other

meds. I had no side effects or any problems with the

Plaquenil. Just remember to get your eyes checked on

a regular basis for the very rare side effect of

retinal damage. Fish oil is very good for

inflammation, and I also take Milk Thistle for extra

liver protection.

I am very glad to hear that you have been able to find

a doctor whom you like and who is doing her best to

treat your RA. Early aggressive treatment with DMARDs

is a must with RA, and she is doing that with

Plaquenil. I wish you the best with the medication,

and hope it works as well for as it worked for me.

Kathe in CA

July 5, 2006

I too am recently diagnosed, I know what it's like when they don't really

believe you. What changed it for me was when he found out that I was on a

" chemo " family medication, that got his attention. He tried to be supportive

but he just couldn't grasp that this wasn't just me being lazy, depressed or out

of shape. You will feel better once you start to get some relief from the

meds. It may take time, but hang in there. Try to find a way to manage your

pain, even if it is only for a few hours of relief. It seems to be easier to

handle if you can get a break from it once in a while. I actually take a

Darvocet and a Zaniflex at bedtime. I wake up feeling a smidge better. This

board is a great place to get support. I haven't been a member long but I

haven't found anyone who isn't sympathetic. Hang in there, you can do this.

Lynn

lnburrell@...

[ ] newly diagnosed

Was diagnosed with RA today and although I've virtually screamed at

the doctor to test me for Lupus, it wasnt done till today. I was

crying but I'm not sure if it was because I was in such pain or that

FINALLY the doctor was listening to me. What now? I've complained so

much to my daughters and husband they all pass me off as a

hypocondriac. Tonight I've told my husband " see...I DO HURT! " and I

was ignored again. I now face this alone. How is that done? I see a

therapist once a week and am on anti depression drugs but I still am

not getting the support from my family that I need. I live in

Louisiana where there is NO support group for lupus sufferers (thanks

Katrina)....Its been one hell of a year. Phyllis

July 6, 2006

>

> Was diagnosed with RA today and although I've virtually screamed at

> the doctor to test me for Lupus, it wasnt done till today. I was

> crying but I'm not sure if it was because I was in such pain or that

> FINALLY the doctor was listening to me. What now? I've complained so

> much to my daughters and husband they all pass me off as a

> hypocondriac. Tonight I've told my husband " see...I DO HURT! " and I

> was ignored again. I now face this alone. How is that done? I see a

> therapist once a week and am on anti depression drugs but I still am

> not getting the support from my family that I need. I live in

> Louisiana where there is NO support group for lupus sufferers (thanks

> Katrina)....Its been one hell of a year. Phyllis

>

Phyllis.,.send e your Email address and I will send you a personal

answer. I hear what you are saying ...and you are not alone. you have

come to the right place for support. And you are right you need support

and need to have your family recognize that you do hurt!!! jenna

July 6, 2006

" ... its been a hell of a year. "

I can only imagine. Please, feel free to vent any time you need to, it's good

for your morale and we understand how you feel since we are all in the same

boat, physically that is.

Take care of yourself.

pox <Phyllis@...> wrote:

Was diagnosed with RA today and although I've virtually screamed at

the doctor to test me for Lupus, it wasnt done till today. I was

crying but I'm not sure if it was because I was in such pain or that

FINALLY the doctor was listening to me. What now? I've complained so

much to my daughters and husband they all pass me off as a

hypocondriac. Tonight I've told my husband " see...I DO HURT! " and I

was ignored again. I now face this alone. How is that done? I see a

therapist once a week and am on anti depression drugs but I still am

not getting the support from my family that I need. I live in

Louisiana where there is NO support group for lupus sufferers (thanks

Katrina)....Its been one hell of a year. Phyllis

July 6, 2006

Phyllis,

I know what you feel like! My husband will say, " ok " when I explain what I

feel like.. and then in the next hour, or later that night act angry because I

won't do something physical (walk thru the mall, play baseball in the yard, do

laundry). with him. UGH! Very frustrating and lonely. Last night my mom told

me I read too much, and that was my problem.. that if I didn't know about these

symptoms, I would not have them!!

I am sorry for what you are going through, and I am here for you -group or

privately.

Kristi

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

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

July 6, 2006

The only way I got thru the SSA and finally got disability was thru

an attorney. Yeah that sucks but she was a professional who KNEW

The words the hearing officer would approve me with. And personally

it was much easier than doing it alone...which I did for a year and

two unapprovals. The lawyer was one of those who did nt get a fee

unless we were approved....and when I was approved I recieved

residual money totalling well over eight thousand dollars...so It

was worth it...I say go with an attorney....

>

> I have not been working for about two years now because of pain

and

> fatigue. I also suffer from migraines and those of you who have

those

> know what a pain in the butt they can be and how they tend to show

up

> more when you are already feeling down. Today, after a couple of

> years of consistently repeating myself, I finally got to see an

> internist/rheumatologist and was officially diagnosed with RA and

> carpal tunnel syndrome in my non-dominant hand. Last year I

applied

> for disability and was denied, this year I'm hoping when I get my

> appeal hearing the RA " label " will help me get SSD. RA and all the

> stuff that comes along with it sux big time,,, but what seems to

make

> everything worse is that I'm only 28 and no matter what I seem to

say

> to people, they don't listen to me. My doctor thought it was all

in

> my head, I had to bring back up people with me to my apts. Finally

I

> complained enough (I used to have a boss who said the squeaky

wheel

> gets the oil) and my GP started running the right tests. The

> Internits/rheumy I saw today was very understanding and instead of

> saying " you're 28, you should be fine " like everyone else does, he

> said " you are a baby, the age of my kids, I really wish you didn't

> have to be here " . It felt nice to maybe not be understood, but not

> looked at like a liar. I'm so tired and really I would like people

to

> say " it'll be ok " but I'll settle for " it won't be this bad

forever " .

> My age seems to be the thing that is killing me, I couldn't get

SSD

> because they said I was so young, nothing is probably wrong with

me,

> I couldn't get legal help to appeal that, because the local legal

> assistance program said that there were older people who needed

their

> help, so i had to appeal alone. Even my family doesn't ask me how

I'm

> doing because they think its all in my head, I'm too young. Thank

god

> for my fiance, if I didn't have him and his belief in me, I

wouldn't

> be able to stand it. I have two beautiful children too, but

sometimes

> I think they'd be better off with someone better than me. I need

> support and as much information as possible on how to win my SSD

> claim, I do deserve it... when I did work I would work 2-3 jobs at

a

> time... I'm so frustrated.. any help would be appreciated. Thank

you.

>

July 6, 2006

How do you sleep? even if I " pill " myself to sleep I wake up

neumerous times during the nite and at times even get out of bed to

find relief...which I sure you know is a never ending search...

--- In , " Lynn Burrell " <lnburrell@...>

wrote:

>

> I too am recently diagnosed, I know what it's like when they don't

really believe you. What changed it for me was when he found out

that I was on a " chemo " family medication, that got his attention.

He tried to be supportive but he just couldn't grasp that this

wasn't just me being lazy, depressed or out of shape. You will

feel better once you start to get some relief from the meds. It may

take time, but hang in there. Try to find a way to manage your

pain, even if it is only for a few hours of relief. It seems to be

easier to handle if you can get a break from it once in a while. I

actually take a Darvocet and a Zaniflex at bedtime. I wake up

feeling a smidge better. This board is a great place to get

support. I haven't been a member long but I haven't found anyone

who isn't sympathetic. Hang in there, you can do this.

>

> Lynn

>

> lnburrell@...

>

> [ ] newly diagnosed

>

> Was diagnosed with RA today and although I've virtually screamed

at

> the doctor to test me for Lupus, it wasnt done till today. I was

> crying but I'm not sure if it was because I was in such pain or

that

> FINALLY the doctor was listening to me. What now? I've

complained so

> much to my daughters and husband they all pass me off as a

> hypocondriac. Tonight I've told my husband " see...I DO HURT! "

and I

> was ignored again. I now face this alone. How is that done? I

see a

> therapist once a week and am on anti depression drugs but I

still am

> not getting the support from my family that I need. I live in

> Louisiana where there is NO support group for lupus sufferers

(thanks

> Katrina)....Its been one hell of a year. Phyllis

>

July 6, 2006

Trust me, between the pain meds, a Xanax (1.0mg) and all my blood pressure

pills, I sleep like the dead. I can usually get about 6 good hours. Talk to

your doc abut better pain management.

[ ] newly diagnosed

>

> Was diagnosed with RA today and although I've virtually screamed

at

> the doctor to test me for Lupus, it wasnt done till today. I was

> crying but I'm not sure if it was because I was in such pain or

that

> FINALLY the doctor was listening to me. What now? I've

complained so

> much to my daughters and husband they all pass me off as a

> hypocondriac. Tonight I've told my husband " see...I DO HURT! "

and I

> was ignored again. I now face this alone. How is that done? I

see a

> therapist once a week and am on anti depression drugs but I

still am

> not getting the support from my family that I need. I live in

> Louisiana where there is NO support group for lupus sufferers

(thanks

> Katrina)....Its been one hell of a year. Phyllis

>

July 7, 2006

>

> Well, the good news is that you have a diagnosis, and it sounds

like

> you have a rheumatologist who not only believes you, but cares.

You

> have no idea how rare that seems to be.

>

> As for the " too young " bull....at 24 I complained to my doctor (I

> had Kaiser, then) that I had palpations and other strange

sensations

> in my chest, including chest pain and dizziness/feeling like I was

> going to faint. He said I was too young for heart disease, even

> though my father died at 52, and my mother had a silent, minor

heart

> attack at 35. At 33 I had surgery to correct an arrhythmia I had

> lived with for nearly 10 years, after a doctor FINALLY listened to

> me and didn't brush it off as either hysterical or a hypochondriac.

> My brother had just died from a previously undiagnosed arrhythmia,

> and I was determined to find out what was wrong. By that time it

had

> become so severe I was nearly bedridden. I learned from that

> experience not to give up, especially if you know something is

> wrong. That has helped me with my current problems....if I hadn't

> learned this lesson, I'd probably believe these dopes when they

told

> me that I just " needed more sleep " and that the pain was due to

> depression.

>

> Hopefully they can get you on the right meds, now, and prevent

most,

> if not all, damage from this point on. You are young, but use that

> to your advantage. I, too, am used to always being on the go. I

> work in publishing, and often put in 18-20 hour days for months on

> end. I actually enjoyed it. I also have horses, and used to ride

8-

> 10 hours a day on my days off, and rode a couple of hours a day

when

> I worked. I just started working again after 2 years off, and I can

> barely get in a 40 hour week....I'm exhausted and in agony by the

> weekend, and haven't done more than feed the horses in well over a

> year. It is frustrating, and you feel so useless when all you can

> really do is lie on the couch and stare at the tv (if you are

lucky).

>

> --

>

Kerri,

You have certainly come to the right place. Many of us have spent

YEARS trying to get diagnosed, and trying to get our FAMILIES to

believe us!! We can feel for you on that one. You wrote that you were

told you were too young for disability. That is a bunch of crap!!

What you need to do is to hit the computer and find an attny in your

area who will take the case on a contingency basis.There are a LOT of

them out there..you just have to look. If you don't win he will not

get paid....that really motivates him to work for you! And the amount

he gets paid comes out of your award and S.S. determines that only a

certain percentage is allowable, and still they have to ok it. So you

don't need money.Where do you live? Maybe someone here lives near you

and will hae a great attny. I have a wonderful one in Phoenix by the

way if anywone is looking in Az. This is a great place to ask

qustions, to vent, and to make friends. Welcome! jenna

August 25, 2006

At 02:54 AM 8/25/06 +0000, you wrote:

> I am 33 yrs old, I have three children my oldest

>is 3 and I have 18 month old twins. Since the day I was dx I have

>refused to think of this as a life long disease I have all the belief

>that a cure other than BMT will be found soon. And until then Gleevec

>seems to working well for many people with CML. Hopefully I will

>continue to not have any side effects.

Hi Kris,

Sounds like you are doing very well....and keep up the good attitude. Also

sounds like you have your hands full at home! Where are you being treated

that is presently doing a 400mg vs 800mg trial with newly diagnosed? just

curious. Sometimes the side effects come and go...if something pops up, let

us know and someone will have some suggestions for you.

Best wishes to you,

C.

Eugene, Oregon.....now on BMS/dasatinib

August 25, 2006

Kris,

You have got a great attitude going!!! Good for you. Attitude is

everything!

We are 2 peas in a pod. I was diagnosed 7/19/06 and I am 33 as well.

Also have a family and no plans of going anywhere.

I've been on 400mg Gleevec since 8/3 and I'm responding awesome.

Counts are dropping fast, hemo climbing, and my spleen which was

once " huge " is normal. All in 3 weeks!!! Gleevec is an amazing drug

and the one's coming down the pike are even better.

When I was diagnosed, my WBC was 200 and the 400mg is working fine.

Why 800mg for you? That's great news you are barely having side

effects.

Stay strong!

J

>

> Hi everyone, I was just dx 7/27/06. I had not been sick I just had

> routine blood work done at my yearly physical and wham, my WB was

> 131,000. I was referred to a oncologist and life has been different

> ever since. I am participating in a study group the 400 vs 800mg

of

> gleevec I have been assigned 800mg I started 08/23/06, I was a bit

> scared thinking that the side effects would be horrible on 800mg

but

> other than some mild nausea on the second day I have had nothing

> else. I feel great. I am 33 yrs old, I have three children my

oldest

> is 3 and I have 18 month old twins. Since the day I was dx I have

> refused to think of this as a life long disease I have all the

belief

> that a cure other than BMT will be found soon. And until then

Gleevec

> seems to working well for many people with CML. Hopefully I will

> continue to not have any side effects.

> Thanks,

> Kris

>

August 25, 2006

> >

> > Hi everyone, I was just dx 7/27/06. I had not been sick I just

had

> > routine blood work done at my yearly physical and wham, my WB

was

> > 131,000. I was referred to a oncologist and life has been

different

> > ever since. I am participating in a study group the 400 vs

800mg

> of

> > gleevec I have been assigned 800mg I started 08/23/06, I was a

bit

> > scared thinking that the side effects would be horrible on 800mg

> but

> > other than some mild nausea on the second day I have had nothing

> > else. I feel great. I am 33 yrs old, I have three children my

> oldest

> > is 3 and I have 18 month old twins. Since the day I was dx I

have

> > refused to think of this as a life long disease I have all the

> belief

> > that a cure other than BMT will be found soon. And until then

> Gleevec

> > seems to working well for many people with CML. Hopefully I

will

> > continue to not have any side effects.

> > Thanks,

> > Kris

> >

>

August 25, 2006

Kris,

Sounds like you are doing great so far. Gleevec is working wonderfully for a

lot of us and if it doesn't work then there are other options out there (besides

BMT). Sounds like you have a great attitude, which is key. I was dx in May of

2005 after being sick with the flu and having some routine blood work done. Not

what you expect when having routine blood work done, I know. I am on 400mg of

Gleevec. I am also 33 years old and have 2 girls (ages 5 and 2 1/2). You sound

like you also have your hands full.

dkaobj5 <jonesdjkj@...> wrote:

Hi everyone, I was just dx 7/27/06. I had not been sick I just had

routine blood work done at my yearly physical and wham, my WB was

131,000. I was referred to a oncologist and life has been different

ever since. I am participating in a study group the 400 vs 800mg of

gleevec I have been assigned 800mg I started 08/23/06, I was a bit

scared thinking that the side effects would be horrible on 800mg but

other than some mild nausea on the second day I have had nothing

else. I feel great. I am 33 yrs old, I have three children my oldest

is 3 and I have 18 month old twins. Since the day I was dx I have

refused to think of this as a life long disease I have all the belief

that a cure other than BMT will be found soon. And until then Gleevec

seems to working well for many people with CML. Hopefully I will

continue to not have any side effects.

Thanks,

Kris

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

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+

countries) for 2¢/min or less.

August 26, 2006

>Hi ,

welcome to the group! Yes, the doctors want to dive right in with

treatment, I know that's how it happened to me. My head was spinning

so fast from the information overload the first few weeks after I was

diagnosed in spring 2005. I hope your doc gets you on an aggresive

treatment plan soon. I have joint erosion my my dominant right wrist,

I've learned to use my left hand for most chores but the left wrist

has active RA in it too...my doc says I probably had RA for years in

my body and didn't know it-the level of inflammation was off the

charts in the beginning. Keep us posted on your appts. '

> Hi everyone,

>

> I hope this is a pain free day for all of you.

>

> I want to start by saying that I have just been diagnosed with RA

only

> 2 days ago. It hasn't even sunk in yet. I have been given a lot of

> paperwork to read and digest, but find it's a lot to absorb.

>

> I haven't started treatment yet because I have to have more blood

work

> drawn and chest x-ray and TB test, then they want to start me on the

> Methotrexate protecol as long as the tests come back clean.

>

> The other factor for delay is that I have had AVN (avascular

necrosis)

> in 2 bones, (scaphoid and lunate bones) on one wrist and have to

have

> it fused soon, and a torn ligaments and other problems in the other

> wrist that may need surgery as well. My rheumatologist tells me

that I

> can not start treatment until the wrist issues are resolved. So, I

> may be having to rush to surgery which I had planned to put off

until

> mid next year after saving up for it. The doctor says that the

longer

> I wait the more severe my condition may become and so she is very

> anxious to begin treatment ASAP.

>

> Is this a normal reaction? Is it really that necessary to rush to

> treat? Yes, I'm in pain in many, many areas of my body, but have

been

> living with it for many years as well. I just don't know how to

> respond or react to such scary news.

>

> Thanks for letting me be a part of this group and I look forward to

> learning more from this group.

>

> All my best,

> Les

>

August 26, 2006

Hi ,

Thank you for responding so quickly. It's good to hear from members of the

group who can help educate me, and help me get a handle on this. THe thought

of what RA can do to your body is beyond comprehension just as the treatments

that the Rheumy wants to start. THe side affects alone sound almost as bad as

the RA. I don't quite know how to feel about that yet. It's all so sudden

and frightening.

THanks again for the support and I look forward to more discussions.

Have a good evening.

Les

<dakirb1@...> wrote: