Hello

[Guest guest]

Hi Zinara... I'm Annette. My guess is that you are one very lucky person.

You had excellent and very quick medical attention; faster than anyone else

I've ever heard of, actually. I would suggest that you do everything those

doctors tell you to do and try not to worry about what may happen next.

Believe me, your experience is quite different (lucky for you) than it is

for most people trying to get diagnosed with these autoimmune diseases.

Keep in touch and let us know how you're doing, okay? My best to you and my

hat is off to your doctors. Annette

HELLO

HI,

I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M LOOKING FOR MORE

INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT WEBSITES

PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE EVERYONE HAS DIFFERENT

EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE CHRISTMAS I WOKE

UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT EVERY MUSCLE IN MY

BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS. FINALLY, THE THIRD

DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE RELAXERS AND DID SOME

BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO RUSH RIGHT IN MY

CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A RHEUMATOLOGIST. HE

DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS SENT TO HAVE A

EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A ENOUGH EVIDENCE FOR

PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF PREDISONE) A DAY. LAST

WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO NORMAL. THAT HE

WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER APPOINTMENT WITH

RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW WEEKS. I DON'T

FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS BEFORE. THE DOCTOR

SAID, I CAME IN DURING THE EARLY STAGES....I JUST WANT TO KNOW IF

SOMEONE'S BEEN THROUGH THE SAME THING AS I HAVE...I'M SCARED IT MIGHT

LOOK BETTER NOW, BUT THINGS MAY CHANGE.

ZINARA

[Guest guest]

Hi Zinara,

Welcome here! I have to agree with Annette...that was

a fast diagnosis! One quick question...are you on

statins? Cholesterol medicine? That's what may have

triggered my DM, so I can't help but ask people who

mention muscle aches!

Again, I agree with Annette...listen to your

docs...sounds like you have some really sharp guys in

your corner. Do what they recommend. Ask about

calcium, tho, prednisone hits our calcium really hard,

removes it from our bodies, so be aware of that, too.

Just go easy on yourself...welcome to our group, lots

of support here!

Lynn

--- zinarac wrote:

> HI,

>

> I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M

> LOOKING FOR MORE

> INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT

> WEBSITES

> PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE

> EVERYONE HAS DIFFERENT

> EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE

> CHRISTMAS I WOKE

> UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT

> EVERY MUSCLE IN MY

> BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS.

> FINALLY, THE THIRD

> DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE

> RELAXERS AND DID SOME

> BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO

> RUSH RIGHT IN MY

> CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A

> RHEUMATOLOGIST. HE

> DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS

> SENT TO HAVE A

> EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A

> ENOUGH EVIDENCE FOR

> PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF

> PREDISONE) A DAY. LAST

> WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO

> NORMAL. THAT HE

> WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER

> APPOINTMENT WITH

> RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW

> WEEKS. I DON'T

> FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS

> BEFORE. THE DOCTOR

> SAID, I CAME IN DURING THE EARLY STAGES....I JUST

> WANT TO KNOW IF

> SOMEONE'S BEEN THROUGH THE SAME THING AS I

> HAVE...I'M SCARED IT MIGHT

> LOOK BETTER NOW, BUT THINGS MAY CHANGE.

>

> ZINARA

>

>

>

>

>

[Guest guest]

Welcome Zinara :-)

I am one of the rare ones like you that got a fast diagnosis (just this

past August), and while not as young as you are, at 33 I am not the norm

age-wise having this disease either. While I had been having some

other issues that eventually led me to the rheumy, I actually had NO real

muscle weakness or pain when I was dx'd. They just happened to check

my cardiac enzymes (which are also the muscle enzymes) and thats when they

realized there was some problem with my muscles.

My CPK never did get as high as yours, but it took me a couple of months

on 60mgs of pred to get them to come down. Yours coming under control

on such a low dose is a real positive and hopefully bodes well for the

future in your case. Its definatly a good thing that your going to

be able to begin the taper of the prednisone so quickly.

I so understand your fear. While I was in pretty good shape at

the time of diagnosis, I became much worse over the next few months and

gained all kinds of new, not fun symptoms during that time (I atleast suspect

that the pred was causing the additional symptoms and making some things

worse rather than better in my case). I am only feeling human again

since the 5th or so of this month (so 5 months of it), and in hindsight

realize how really really bad I was feeling. I knew I was miserable

at the time, just had not realized how much I was not able to do and how

bad it had gotten. So while I am SO excited to feel better and am

so tickled to be able to finally do things with my kids that I had not

been able to for so long, but there is a fear there though...wondering

how long I have before it strikes again....fear about whether it could

be worse the next time.......the fear is there. I know logically

that we have to just appreciate every day and make the best of it because

there is nothing we can do to change the future really, but emotionally

I have moments when its very hard. I have so many depending on me,

this has been a real wake up call for all of us. I sure wish I could

reassure you about the future more, but your having a diagnosis, having

good doctors, being young and strong, and responding so well to the meds

really does make things looks better than they are for so many with this

disease.

Welcome to the group!!!

BIG hugs,

zinarac wrote:

MY DOCTOR SAID THAT THIS WAS A ENOUGH EVIDENCE

FOR

PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF PREDISONE) A DAY.

LAST

WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO NORMAL. THAT

HE

WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER APPOINTMENT

WITH

RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW WEEKS. I DON'T

FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS BEFORE. THE DOCTOR

SAID, I CAME IN DURING THE EARLY STAGES....I JUST WANT TO KNOW

IF

SOMEONE'S BEEN THROUGH THE SAME THING AS I HAVE...I'M SCARED IT

MIGHT

LOOK BETTER NOW, BUT THINGS MAY CHANGE.

ZINARA

[Guest guest]

Hi Zinara,

I'm Cari. My 5 year old son, , had DM. I ditto what Annette said.

also received a very quick diagnosis and was treated agressively by a

Juvenile Rheumotologist. The disease did it's thing very, very quickly

right before turned 3. He lost all muscle use within a few days.

Because he was treated so quickly, he has completely recovered and it doing

very well.

You came to the right place for answers and support. Listen to your

Doctors, it sounds like you hit the jackpot with them.

Welcome,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: RE: HELLO

>Date: Wed, 16 Jan 2002 19:39:36 -0500

>

>Hi Zinara... I'm Annette. My guess is that you are one very lucky person.

>You had excellent and very quick medical attention; faster than anyone else

>I've ever heard of, actually. I would suggest that you do everything those

>doctors tell you to do and try not to worry about what may happen next.

>Believe me, your experience is quite different (lucky for you) than it is

>for most people trying to get diagnosed with these autoimmune diseases.

>Keep in touch and let us know how you're doing, okay? My best to you and

>my

>hat is off to your doctors. Annette

>

> HELLO

>

>

>HI,

>

>I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M LOOKING FOR MORE

>INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT WEBSITES

>PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE EVERYONE HAS DIFFERENT

>EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE CHRISTMAS I WOKE

>UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT EVERY MUSCLE IN MY

>BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS. FINALLY, THE THIRD

>DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE RELAXERS AND DID SOME

>BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO RUSH RIGHT IN MY

>CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A RHEUMATOLOGIST. HE

>DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS SENT TO HAVE A

>EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A ENOUGH EVIDENCE FOR

>PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF PREDISONE) A DAY. LAST

>WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO NORMAL. THAT HE

>WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER APPOINTMENT WITH

>RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW WEEKS. I DON'T

>FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS BEFORE. THE DOCTOR

>SAID, I CAME IN DURING THE EARLY STAGES....I JUST WANT TO KNOW IF

>SOMEONE'S BEEN THROUGH THE SAME THING AS I HAVE...I'M SCARED IT MIGHT

>LOOK BETTER NOW, BUT THINGS MAY CHANGE.

>

>ZINARA

>

>

>

>

>

>

>

>

[Guest guest]

Hi Zinara,

I'm Cari. My 5 year old son, , had DM. I ditto what Annette said.

also received a very quick diagnosis and was treated agressively by a

Juvenile Rheumotologist. The disease did it's thing very, very quickly

right before turned 3. He lost all muscle use within a few days.

Because he was treated so quickly, he has completely recovered and it doing

very well.

You came to the right place for answers and support. Listen to your

Doctors, it sounds like you hit the jackpot with them.

Welcome,

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: RE: HELLO

>Date: Wed, 16 Jan 2002 19:39:36 -0500

>

>Hi Zinara... I'm Annette. My guess is that you are one very lucky person.

>You had excellent and very quick medical attention; faster than anyone else

>I've ever heard of, actually. I would suggest that you do everything those

>doctors tell you to do and try not to worry about what may happen next.

>Believe me, your experience is quite different (lucky for you) than it is

>for most people trying to get diagnosed with these autoimmune diseases.

>Keep in touch and let us know how you're doing, okay? My best to you and

>my

>hat is off to your doctors. Annette

>

> HELLO

>

>

>HI,

>

>I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M LOOKING FOR MORE

>INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT WEBSITES

>PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE EVERYONE HAS DIFFERENT

>EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE CHRISTMAS I WOKE

>UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT EVERY MUSCLE IN MY

>BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS. FINALLY, THE THIRD

>DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE RELAXERS AND DID SOME

>BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO RUSH RIGHT IN MY

>CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A RHEUMATOLOGIST. HE

>DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS SENT TO HAVE A

>EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A ENOUGH EVIDENCE FOR

>PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF PREDISONE) A DAY. LAST

>WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO NORMAL. THAT HE

>WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER APPOINTMENT WITH

>RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW WEEKS. I DON'T

>FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS BEFORE. THE DOCTOR

>SAID, I CAME IN DURING THE EARLY STAGES....I JUST WANT TO KNOW IF

>SOMEONE'S BEEN THROUGH THE SAME THING AS I HAVE...I'M SCARED IT MIGHT

>LOOK BETTER NOW, BUT THINGS MAY CHANGE.

>

>ZINARA

>

>

>

>

>

>

>

>

[Guest guest]

LYNN- I HAVEN'T TOOK ANY TYPE OF MEDICINES, SO I'M NOT TO SURE WHAT

TRIGGERED IT. THANKS FOR YOUR GUYS SUPPORT

> > HI,

> >

> > I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M

> > LOOKING FOR MORE

> > INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT

> > WEBSITES

> > PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE

> > EVERYONE HAS DIFFERENT

> > EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE

> > CHRISTMAS I WOKE

> > UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT

> > EVERY MUSCLE IN MY

> > BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS.

> > FINALLY, THE THIRD

> > DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE

> > RELAXERS AND DID SOME

> > BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO

> > RUSH RIGHT IN MY

> > CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A

> > RHEUMATOLOGIST. HE

> > DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS

> > SENT TO HAVE A

> > EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A

> > ENOUGH EVIDENCE FOR

> > PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF

> > PREDISONE) A DAY. LAST

> > WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO

> > NORMAL. THAT HE

> > WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER

> > APPOINTMENT WITH

> > RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW

> > WEEKS. I DON'T

> > FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS

> > BEFORE. THE DOCTOR

> > SAID, I CAME IN DURING THE EARLY STAGES....I JUST

> > WANT TO KNOW IF

> > SOMEONE'S BEEN THROUGH THE SAME THING AS I

> > HAVE...I'M SCARED IT MIGHT

> > LOOK BETTER NOW, BUT THINGS MAY CHANGE.

> >

> > ZINARA

> >

> >

> >

> >

> >

[Guest guest]

LYNN- I HAVEN'T TOOK ANY TYPE OF MEDICINES, SO I'M NOT TO SURE WHAT

TRIGGERED IT. THANKS FOR YOUR GUYS SUPPORT

> > HI,

> >

> > I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M

> > LOOKING FOR MORE

> > INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT

> > WEBSITES

> > PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE

> > EVERYONE HAS DIFFERENT

> > EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE

> > CHRISTMAS I WOKE

> > UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT

> > EVERY MUSCLE IN MY

> > BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS.

> > FINALLY, THE THIRD

> > DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE

> > RELAXERS AND DID SOME

> > BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO

> > RUSH RIGHT IN MY

> > CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A

> > RHEUMATOLOGIST. HE

> > DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS

> > SENT TO HAVE A

> > EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A

> > ENOUGH EVIDENCE FOR

> > PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF

> > PREDISONE) A DAY. LAST

> > WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO

> > NORMAL. THAT HE

> > WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER

> > APPOINTMENT WITH

> > RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW

> > WEEKS. I DON'T

> > FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS

> > BEFORE. THE DOCTOR

> > SAID, I CAME IN DURING THE EARLY STAGES....I JUST

> > WANT TO KNOW IF

> > SOMEONE'S BEEN THROUGH THE SAME THING AS I

> > HAVE...I'M SCARED IT MIGHT

> > LOOK BETTER NOW, BUT THINGS MAY CHANGE.

> >

> > ZINARA

> >

> >

> >

> >

> >

[Guest guest]

LYNN- I HAVEN'T TOOK ANY TYPE OF MEDICINES, SO I'M NOT TO SURE WHAT

TRIGGERED IT. THANKS FOR YOUR GUYS SUPPORT

> > HI,

> >

> > I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M

> > LOOKING FOR MORE

> > INFORMATION ON THIS CONDITION. I'VE SEARCH DIFFERENT

> > WEBSITES

> > PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE

> > EVERYONE HAS DIFFERENT

> > EXPERIENCES. WELL, HERE IS MY STORY. A WEEK BEFORE

> > CHRISTMAS I WOKE

> > UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS WORKOUT

> > EVERY MUSCLE IN MY

> > BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH ARMS.

> > FINALLY, THE THIRD

> > DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE

> > RELAXERS AND DID SOME

> > BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS TO

> > RUSH RIGHT IN MY

> > CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO A

> > RHEUMATOLOGIST. HE

> > DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I WAS

> > SENT TO HAVE A

> > EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A

> > ENOUGH EVIDENCE FOR

> > PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF

> > PREDISONE) A DAY. LAST

> > WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS BACK TO

> > NORMAL. THAT HE

> > WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE ANOTHER

> > APPOINTMENT WITH

> > RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A FEW

> > WEEKS. I DON'T

> > FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS

> > BEFORE. THE DOCTOR

> > SAID, I CAME IN DURING THE EARLY STAGES....I JUST

> > WANT TO KNOW IF

> > SOMEONE'S BEEN THROUGH THE SAME THING AS I

> > HAVE...I'M SCARED IT MIGHT

> > LOOK BETTER NOW, BUT THINGS MAY CHANGE.

> >

> > ZINARA

> >

> >

> >

> >

> >

[Guest guest]

Good...see, I'm really paranoid about statins now! I

mention it to my friends...want to warn them.

sometimes I think they think I'm weird (probably am to

some degree!) but gee whiz, there is a risk when

taking them! I found out the hard way!

Lynn

--- zinarac wrote:

> LYNN- I HAVEN'T TOOK ANY TYPE OF MEDICINES, SO I'M

> NOT TO SURE WHAT

> TRIGGERED IT. THANKS FOR YOUR GUYS SUPPORT

>

>

> > > HI,

> > >

> > > I'M 23 YEARS OLD I JUST FOUND OUT I HAVE PM. I'M

> > > LOOKING FOR MORE

> > > INFORMATION ON THIS CONDITION. I'VE SEARCH

> DIFFERENT

> > > WEBSITES

> > > PERSONAL AND INFORMATIONAL AND IT SEEMS LIKE

> > > EVERYONE HAS DIFFERENT

> > > EXPERIENCES. WELL, HERE IS MY STORY. A WEEK

> BEFORE

> > > CHRISTMAS I WOKE

> > > UP LIKE SOMEONE PUT ME THROUGH A STRENUOUS

> WORKOUT

> > > EVERY MUSCLE IN MY

> > > BODY ACHE. TRYING TO SIT UP, I HAD USE BOTH

> ARMS.

> > > FINALLY, THE THIRD

> > > DAY I WENT TO THE DOCTORS, THE GAVE ME MUSCLE

> > > RELAXERS AND DID SOME

> > > BLOOD WORK. I GOT A CALL BACK FROM THE DOCTORS

> TO

> > > RUSH RIGHT IN MY

> > > CKM LEVEL WAS AT 6,000, MY DOCTOR REFERRED ME TO

> A

> > > RHEUMATOLOGIST. HE

> > > DID MORE BLOOD WORK, MY CKM WAS UP TO 11,000. I

> WAS

> > > SENT TO HAVE A

> > > EMG AND CAT SCAN. MY DOCTOR SAID THAT THIS WAS A

> > > ENOUGH EVIDENCE FOR

> > > PM. THE DOCTOR KNOW HAS ME ON 2 1/2 (20 MG OF

> > > PREDISONE) A DAY. LAST

> > > WEEK I TOOK ANOTHER BLOOD TEST AND MY CK WAS

> BACK TO

> > > NORMAL. THAT HE

> > > WOULD TAPER MY DOSAGE IN A FEW WEEKS. I HAVE

> ANOTHER

> > > APPOINTMENT WITH

> > > RHEUMATOLOGIST AT U OF WASHINGTON (SEATTLE) IN A

> FEW

> > > WEEKS. I DON'T

> > > FEEL COMPLETELY NORMAL, NOR DO I FEEL AS ACHY AS

> > > BEFORE. THE DOCTOR

> > > SAID, I CAME IN DURING THE EARLY STAGES....I

> JUST

> > > WANT TO KNOW IF

> > > SOMEONE'S BEEN THROUGH THE SAME THING AS I

> > > HAVE...I'M SCARED IT MIGHT

> > > LOOK BETTER NOW, BUT THINGS MAY CHANGE.

> > >

> > > ZINARA

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Dawn... Twenty-eight is SO young to have to think about these things. I was

fifty when I had to leave work so it wasn't so bad. (Although it seemed bad

at the time...I wasn't really ready to be told I could no longer work.) I'm

very glad you have a doctor who understands the severity of what you're

going through. Good luck to you. Annette

Hello

Sorry it's been a few days since I've posted. I've been reading all the

posts and keeping you all in my thoughts & prayers. Ed - I'm sorry to

hear you've had such a rough week and hope you're feeling stronger.

Those Dr's. better get the ball rolling or they're going to have quite a

few PM patients from our little group on their backs....LOL. I'm sure

they don't need that. I went to see my family Dr. today and found out

that I tested positive for the RO antibody, which I knew (Sjogren's

Syndrome), but also the JO antibody. Vicki, can you explain this a

little further to me? My Dr. didn't know much about it, but knew it

involved the lungs. I've been a chronic asthmatic for all my life

anyway, so this just adds a new twist, I guess. I asked her about

Celebrex because the Tylenol #3 just isn't doing it for me anymore, but

I can't take it since I'm on the blood thinners for my blood clots.

Instead, she prescribed a muscle relaxer (Flexeral) for night time. She

also told me I'm NOT to go back to work and to bring in the Disability

forms and she would complete and send in all my medical reports showing

I'm unable to work. Although it's a bit sobering to realize the

severity of this disease and I won't be able to work again (I'm only

28), it's kind of a relief to know that she thinks Disability is an

option and this isn't all in my head. For some reason, I was thinking

she would look at me and tell me to stop being such a wimp and get back

to work. LOL. Anyway, that's my saga for today. Have a great day

everyone.

Dawn

[Guest guest]

Sounds like you have a supportive doctor who wants the

best for you, Dawn. And even if you can no longer

work in your current job, perhaps in a while, you'll

find something to pursue that really interests you and

it might turn out to be something wonderful for you.

Hugs,

Lynn

--- Annette Flamand wrote:

> Dawn... Twenty-eight is SO young to have to think

> about these things. I was

> fifty when I had to leave work so it wasn't so bad.

> (Although it seemed bad

> at the time...I wasn't really ready to be told I

> could no longer work.) I'm

> very glad you have a doctor who understands the

> severity of what you're

> going through. Good luck to you. Annette

>

> Hello

>

>

> Sorry it's been a few days since I've posted. I've

> been reading all the

> posts and keeping you all in my thoughts & prayers.

> Ed - I'm sorry to

> hear you've had such a rough week and hope you're

> feeling stronger.

> Those Dr's. better get the ball rolling or they're

> going to have quite a

> few PM patients from our little group on their

> backs....LOL. I'm sure

> they don't need that. I went to see my family Dr.

> today and found out

> that I tested positive for the RO antibody, which I

> knew (Sjogren's

> Syndrome), but also the JO antibody. Vicki, can you

> explain this a

> little further to me? My Dr. didn't know much about

> it, but knew it

> involved the lungs. I've been a chronic asthmatic

> for all my life

> anyway, so this just adds a new twist, I guess. I

> asked her about

> Celebrex because the Tylenol #3 just isn't doing it

> for me anymore, but

> I can't take it since I'm on the blood thinners for

> my blood clots.

> Instead, she prescribed a muscle relaxer (Flexeral)

> for night time. She

> also told me I'm NOT to go back to work and to bring

> in the Disability

> forms and she would complete and send in all my

> medical reports showing

> I'm unable to work. Although it's a bit sobering to

> realize the

> severity of this disease and I won't be able to work

> again (I'm only

> 28), it's kind of a relief to know that she thinks

> Disability is an

> option and this isn't all in my head. For some

> reason, I was thinking

> she would look at me and tell me to stop being such

> a wimp and get back

> to work. LOL. Anyway, that's my saga for today.

> Have a great day

> everyone.

>

> Dawn

>

>

>

>

>

>

[Guest guest]

Sounds like you have a supportive doctor who wants the

best for you, Dawn. And even if you can no longer

work in your current job, perhaps in a while, you'll

find something to pursue that really interests you and

it might turn out to be something wonderful for you.

Hugs,

Lynn

--- Annette Flamand wrote:

> Dawn... Twenty-eight is SO young to have to think

> about these things. I was

> fifty when I had to leave work so it wasn't so bad.

> (Although it seemed bad

> at the time...I wasn't really ready to be told I

> could no longer work.) I'm

> very glad you have a doctor who understands the

> severity of what you're

> going through. Good luck to you. Annette

>

> Hello

>

>

> Sorry it's been a few days since I've posted. I've

> been reading all the

> posts and keeping you all in my thoughts & prayers.

> Ed - I'm sorry to

> hear you've had such a rough week and hope you're

> feeling stronger.

> Those Dr's. better get the ball rolling or they're

> going to have quite a

> few PM patients from our little group on their

> backs....LOL. I'm sure

> they don't need that. I went to see my family Dr.

> today and found out

> that I tested positive for the RO antibody, which I

> knew (Sjogren's

> Syndrome), but also the JO antibody. Vicki, can you

> explain this a

> little further to me? My Dr. didn't know much about

> it, but knew it

> involved the lungs. I've been a chronic asthmatic

> for all my life

> anyway, so this just adds a new twist, I guess. I

> asked her about

> Celebrex because the Tylenol #3 just isn't doing it

> for me anymore, but

> I can't take it since I'm on the blood thinners for

> my blood clots.

> Instead, she prescribed a muscle relaxer (Flexeral)

> for night time. She

> also told me I'm NOT to go back to work and to bring

> in the Disability

> forms and she would complete and send in all my

> medical reports showing

> I'm unable to work. Although it's a bit sobering to

> realize the

> severity of this disease and I won't be able to work

> again (I'm only

> 28), it's kind of a relief to know that she thinks

> Disability is an

> option and this isn't all in my head. For some

> reason, I was thinking

> she would look at me and tell me to stop being such

> a wimp and get back

> to work. LOL. Anyway, that's my saga for today.

> Have a great day

> everyone.

>

> Dawn

>

>

>

>

>

>

[Guest guest]

Thanks, Annette. I don't think it really matters what age you are when faced

with this disease, it just plain sucks!!! LOL. The part that really bothers me

is that my kids are so young (5 1/2 and 3) and shouldn't have to grow up with a

sick mom. I feel that I'm robbing them of something.

Dawn

Annette Flamand wrote:

> Dawn... Twenty-eight is SO young to have to think about these things. I was

> fifty when I had to leave work so it wasn't so bad. (Although it seemed bad

> at the time...I wasn't really ready to be told I could no longer work.) I'm

> very glad you have a doctor who understands the severity of what you're

> going through. Good luck to you. Annette

>

> Hello

>

> Sorry it's been a few days since I've posted. I've been reading all the

> posts and keeping you all in my thoughts & prayers. Ed - I'm sorry to

> hear you've had such a rough week and hope you're feeling stronger.

> Those Dr's. better get the ball rolling or they're going to have quite a

> few PM patients from our little group on their backs....LOL. I'm sure

> they don't need that. I went to see my family Dr. today and found out

> that I tested positive for the RO antibody, which I knew (Sjogren's

> Syndrome), but also the JO antibody. Vicki, can you explain this a

> little further to me? My Dr. didn't know much about it, but knew it

> involved the lungs. I've been a chronic asthmatic for all my life

> anyway, so this just adds a new twist, I guess. I asked her about

> Celebrex because the Tylenol #3 just isn't doing it for me anymore, but

> I can't take it since I'm on the blood thinners for my blood clots.

> Instead, she prescribed a muscle relaxer (Flexeral) for night time. She

> also told me I'm NOT to go back to work and to bring in the Disability

> forms and she would complete and send in all my medical reports showing

> I'm unable to work. Although it's a bit sobering to realize the

> severity of this disease and I won't be able to work again (I'm only

> 28), it's kind of a relief to know that she thinks Disability is an

> option and this isn't all in my head. For some reason, I was thinking

> she would look at me and tell me to stop being such a wimp and get back

> to work. LOL. Anyway, that's my saga for today. Have a great day

> everyone.

>

> Dawn

>

>

[Guest guest]

Thanks, Lynn. Just taking it day by day......

Hugs back,

Dawn

Lynn wrote:

> Sounds like you have a supportive doctor who wants the

> best for you, Dawn. And even if you can no longer

> work in your current job, perhaps in a while, you'll

> find something to pursue that really interests you and

> it might turn out to be something wonderful for you.

>

> Hugs,

> Lynn

>

> --- Annette Flamand wrote:

> > Dawn... Twenty-eight is SO young to have to think

> > about these things. I was

> > fifty when I had to leave work so it wasn't so bad.

> > (Although it seemed bad

> > at the time...I wasn't really ready to be told I

> > could no longer work.) I'm

> > very glad you have a doctor who understands the

> > severity of what you're

> > going through. Good luck to you. Annette

> >

> > Hello

> >

> >

> > Sorry it's been a few days since I've posted. I've

> > been reading all the

> > posts and keeping you all in my thoughts & prayers.

> > Ed - I'm sorry to

> > hear you've had such a rough week and hope you're

> > feeling stronger.

> > Those Dr's. better get the ball rolling or they're

> > going to have quite a

> > few PM patients from our little group on their

> > backs....LOL. I'm sure

> > they don't need that. I went to see my family Dr.

> > today and found out

> > that I tested positive for the RO antibody, which I

> > knew (Sjogren's

> > Syndrome), but also the JO antibody. Vicki, can you

> > explain this a

> > little further to me? My Dr. didn't know much about

> > it, but knew it

> > involved the lungs. I've been a chronic asthmatic

> > for all my life

> > anyway, so this just adds a new twist, I guess. I

> > asked her about

> > Celebrex because the Tylenol #3 just isn't doing it

> > for me anymore, but

> > I can't take it since I'm on the blood thinners for

> > my blood clots.

> > Instead, she prescribed a muscle relaxer (Flexeral)

> > for night time. She

> > also told me I'm NOT to go back to work and to bring

> > in the Disability

> > forms and she would complete and send in all my

> > medical reports showing

> > I'm unable to work. Although it's a bit sobering to

> > realize the

> > severity of this disease and I won't be able to work

> > again (I'm only

> > 28), it's kind of a relief to know that she thinks

> > Disability is an

> > option and this isn't all in my head. For some

> > reason, I was thinking

> > she would look at me and tell me to stop being such

> > a wimp and get back

> > to work. LOL. Anyway, that's my saga for today.

> > Have a great day

> > everyone.

> >

> > Dawn

> >

> >

> >

> >

> >

> >

[Guest guest]

welcome to the group and congrats on your approval

Hello

>

> Good evening everyone,

>

> This is my first time sending a post. I am Marie, 50yrs. old, wife,

mother, grandma and proud of all of them:)

>

> Is there anyone being seen at UCSF in San Francisco, CA ? I have a surgery

date of Aug. 19th however I have yet to get any information from the Dr.'s

office about my insurance (Atena PPO). I know it takes about a month to find

out either way but I am getting a little nervous since it is only 14 days

away. I have called the office but have yet to get a reply from them. Any

insight?

>

> Thank you for listening:)

>

> Marie -- San Leandro, CA

>

>

>

>

>

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

>

[Guest guest]

Yes it is welcome and ask away

TN

Hello

> Hi...I am not sure I'm doing this right--I would love to ask you all some

> questions about surgery, is this the address to which I should be writing?

>

> evelyn

> evelynsherwood@...

>

>

> To Subscribe to 's weekly FREE Newsletter send an email to

GBCookbook-subscribe@...

>

[Guest guest]

That's right . Ask away. And welcome to our wonderful group. Glad to

have you with us.

Jeanne in WI

Age 39

Open RNY 05/21/2002

314/ 261 /150-175

5' 8 "

djgraves@...

[Guest guest]

Dear ,

Yep! You've found the right place. Ask away. No topic is

sacred, right ladies and gents...? And .. Welcome!

Love,

Trace

Starting weight -- 351.2

Current weight -- 342/ /145?

Surgery date -- 9/5/02

Dr. Schechner,

Va. Beach and Norfolk, VA

Gal. 2:20

[Guest guest]

Dear Gwen,

Welcome to the group.. I am sure that things are gonna be ok.. Surgery is a

scary thing, and yes, most of us go through a fear before surgery.. you are

reacting normally.

Take care

Hugs,

from GA

open RNY 12/12/00

Revision 04/18/01

Revision 02/07/02

St wt.... 392

Cw.......187

Wt loss..-205

[Guest guest]

Gwen

Honey welcome to the group! I am new too...but have found so much information

here and such great friends!

Fear is a natural thing, I have had surgery several times over my life and

yes I am scared everytime. We will all pray for you of courese, and you know

what...before long you will be wringing letters whooping and hollering about

your weight loss. Take a deep breath and get ready for your new life.

God Bless you...big hugs Sherry

Sherry in TN (Pre-op)

[Guest guest]

Hi Gwen. Welcome to our wonderful group. Yes, your feelings are totally

normal. Let me tell you that it is not so bad. I was really scared back when I

had my gallbladder surgery in 1987. It's normal to fear the unknown. But now

I've been through it 4 times, so I know what to expect. They will give you some

medicine right before your surgery to help you to relax and stay calm. Then

you're in the operating room, they get you situated on the table, they put a

mask over your face and Voila!, you go to sleep. Sometimes they have you count

backwards from 100, but usually you don't make it much past 97. It will seem

like seconds later and you will be waking up in recovery. You'll notice that

your abdomen will feel like a truck ran over it, maybe you'll get sick, I did

once, and then you'll realize, hey, I'm awake and it's over. Not too shabby. I

hope I've helped to calm your fears a little bit. Feel free to share your every

thought and fear with us between now and the 16th. Take care.

Jeanne in WI

Age 39

Open RNY 05/21/2002

314/ 259.5 /150-175

5' 8 "

djgraves@...

[Guest guest]

Dear Gwen,

Welcome to the group and congratulations on your decision/surgery

date. I know that this wasn't an easy decision to make but I think you've

made the right one. I promise to pray for you and your upcoming surgery.

God bless you richly.

Love,

Trace

Starting weight -- 351.2

Current weight -- 342/ /145?

Surgery date -- 9/5/02

Dr. Schechner,

Va. Beach and Norfolk, VA

Gal. 2:20

[Guest guest]

HI Gwen and welcome to the group and I hope you feel welcome and free to ask

us any questions you might have and congrats on your surgery date and so you

have or want an angel ? who is your DR ?

TN

hello

> Hi

> I have just recently joined this fine group. I live in Alabama and

> I am scheduled to have my surgery on September 16. I have not had

> but one other surgery in my life and I was very young then, so I am

> really scared about the prospects of being put to sleep. Isn't it

> funny I should be worried about how to deal with the *after life* but

> I am sooooo ready for that. I have worried more about not waking up

> after the surgery. I'm sure a lot of you that are post-op have been

> through the same feelings that I am going through, and it is

> wonderful to see all the success stories. I just ask that you all

> say a prayer, chant, light a candle, or whatever your belief is that

> all will go fine. I trust my doctor so much or I would not be

> letting him do this for me. I also enjoy learning things that I will

> need after I'm post-op so keep all the information coming...

>

> Thanks,

> gwen

>

>

>

>

> To Subscribe to 's weekly FREE Newsletter send an email to

GBCookbook-subscribe@...

>

[Guest guest]

Hi Gwen! I will be most happy to say some prayers for you! I wish you

all the very best in your journey. You will learn so much from these

wonderful people.

Tina in FL

[Guest guest]

In a message dated Tue, 3 Sep 2002 8:50:21 PM Eastern Standard Time, kingskid906

writes:

> I have a question about the " protein " drinks you all are raving about... what

> are they? do they REALLY take good? and where can i try

> them?

Go to www.vitalady.com. is a wealth of information. She has samples

that you can purchase for $2 and so you can try which ones you like without

buying a whole big bunch at once. SHE likes Pro Score 100 chocolate and thinks

there is NONE other than that, however, I really am liking the new Whey stack,

and I also like Pro Complex and Pro V 60. I do vanilla on occasion, or bury it

with the chocolate.

Welcome!!!!

B

Distal RNY 12/95

275/145/155 bounceback