My 1st Rheumy Visit

[Guest guest]

In a message dated 08/01/2001 3:27:07 PM Eastern Daylight Time,

snooks_3337@... writes:

<< I nearly fell off my chair when he said there is no connection

between the itching and arthritis. Has anyone else suffered like

this on a visit to a Rheumy or am I just silly. :}

>>

RUN - do not walk to another rheumy! (ok, you can walk or drive if the knees

hurt )

This idiot needs to find a brain. PA is diagnosed by ruling out other things

(RA, Lupus, Lyme, etc.) but there is no test for PA. It sounds like this

rheumy needs to go back to school to learn what PA is. Where do you live?

Maybe someone on here knows of a good one in your area.

And, no, you're not being silly, the pain isn't in your head. PA HURTS! and

it's real. Go find a doctor who knows this.

Best of luck,

P.S. Don't mean to sound sexist here, but if you are female, I have found

that with some doctors that is strike one against you. Be an overweight

female and that's strike two. Your complaints won't be taken seriously and

they will tell you either 1. It's all in your head or 2. It's your weight.

I hope you find a caring rheumy who can empathize and treat you properly. I

think most of us have been through this stage - thinking we are nuts because

our doctors act like there is nothing wrong with us - keep reading and

posting here and question your doctors with what you learn here.

[Guest guest]

Hello snooks...

I forget what the name was so will go with the email addy of snooks.

I read your email and we must go to the same rheumy. I was told mine was the

best there is where I live. Go figure... he has nothing on the Marcus Welby

Bedside Manners. Frozen face and all. I think they get that way after

awhile.

But enough with the doctor. It has come to be my understanding that many

rheumatologists have " very " busy offices and listen to so many talk about

their pains and condition they become mummified and think very different

from us. Woah is us.

But again I got distracted by my thoughts on my rheumy / your rheumy and how

a doctor is this way. Sure you can go running off and looking for a new

doctor but then your new doctor will reaccess your case and take longer to

come up with a successful treatment plan.

Then on the other hand, there is " nothing wrong with you. "

Here is the part where things get good and not to say you should not pursue

the course of finding out if it is PA but could also be another disease. I

do not have PA but when I was being diagnosed with MCTD (mixed connective

tissue disease), I eagerly read all that I needed to read and learned all

that I needed to know. I still like the PA group as many have come up with

interesting information on the itching scalp conditions and dry skin but now

that i feel comfortable in my diagnosis, I am pretty sure I do not have PA.

I have the high positive blood tests to back this up. I actually have MCTD,

with Lupus and RA and a few other little auto-immune diseases which overlap.

For you folks without positive test results, my heart goes out to you.

Chances are the speedy diagnosis took some time and was not speedy it all.

Neither was mine. In fact, I went to the shrink long before going the rheumy

and the neurologist.

There is a sister disease to MCTD but with negative test results. It is

called UCTD (undifferentiated connective tissue disease) which has all the

nasties I have but without the test results to back it up. Is it painful?

Oh my, yes! I would suggest you try and do some reading on it. Do you have

any swelling?

Anyways, just wanted to mention this as a possibility. It is a rather rare

disease but not so rare as to have many people on the newsgroup who all

suffer to varying degrees. If you need more info feel free to email me. I

could send you a few urls to refference.

Better health to ALL!

Always,

the cloud

[Guest guest]

In a message dated 8/1/01 2:27:00 PM Central Daylight Time,

snooks_3337@... writes:

> Maybe the arthritis

> got a fright because it cleared up about 2 days before my visit.

>

I was misdiagnosed at an earlier stage because the flare-ups would only last

3 days. I always called the first day but could never get an appt in time

for the rheumy to see me. Luckily (?!) I have visible signs of psoriasis so

I was finally diagnosed with PA. Good luck - you'll need it! (or a new doctor)

Chicagoland Sharon.

[Guest guest]

Okay are you guys ready for this? I'll give you a little recap of

my situation. A month ago I went to the dr. because my neck hurt so

bad I could barely move it. I also had been having pain in my left

knee and my left thumb for over a year all the time. So my GP ran

an RA test. They called me back 2 days later and told me (In a real

sympathetic voice) that and I quote, " Hi Honey, your lab results

came back (long pause) and your levels came back highly elevated

and with levels as high as yours we worry about lupus. I'm so sorry

honey, keep your head up. We are referring you to a Rheumatologist "

blah blah blah So needless to say I have been a nervous wreck for

over a month. Writing down all my pains and where they are at. I

figure, if they only tested me for RA and it came back highly

elevated, then of course I have RA. Well I finally go to the appt.

and he says that my RF test came back

NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

!!!! I was so pissed I could not hold in my frustration. I told him

what the dr.'s asst. had told me and he showed me the lupus levels

and said that they were slightly elevated but still within range.

He assured me I DO NOT have RA or Lupus. He said that it happens

all the time like that, but the good news was it at least got me

where I needed to be anyway. Yes, I was thrilled to hear that but

still can't get past the fact that I have been worried sick for a

month. He did a physical exam on me and looked at my list of aches

and pains. He is pretty sure it is Osteoarthritis in my neck, thumb

and knee. My kneecap is moving around more than it should as well.

He gave me a better muscle relaxer (in his opinion) called Skelaxin

(metaxalone)and put me on an NSAID called Voltaren. he said I

should start to feel better in a couple days in my neck and a couple

weeks everywhere else. I will go back to him in 6 weeks and if

anything still hurts after that medicine I'll have it Xrayed. But

he is pretty sure it is just Osteoarthritus. So that is the good

news...I'm just livid that I had a month of stress when all they had

to say was that they were referring me to a Rheumy because my Lupus

level was slightly elevated, but that the RF test came back negative!

Thanks for listening

Bobbi

[Guest guest]

Sorry that you had to go through that, Bobbi. Unfortunately, it happens a

lot. Even some rheumatologists seem to be unable to interpret the labs and

refrain from frightening patients.

It's good that you will be meeting with the rheumatologist again in 6 weeks,

so that you both can be fairly certain that your problems are limited to OA.

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

[ ] My 1st Rheumy Visit

> Okay are you guys ready for this? I'll give you a little recap of

> my situation. A month ago I went to the dr. because my neck hurt so

> bad I could barely move it. I also had been having pain in my left

> knee and my left thumb for over a year all the time. So my GP ran

> an RA test. They called me back 2 days later and told me (In a real

> sympathetic voice) that and I quote, " Hi Honey, your lab results

> came back (long pause) and your levels came back highly elevated

> and with levels as high as yours we worry about lupus. I'm so sorry

> honey, keep your head up. We are referring you to a Rheumatologist "

> blah blah blah So needless to say I have been a nervous wreck for

> over a month. Writing down all my pains and where they are at. I

> figure, if they only tested me for RA and it came back highly

> elevated, then of course I have RA. Well I finally go to the appt.

> and he says that my RF test came back

> NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> !!!! I was so pissed I could not hold in my frustration. I told him

> what the dr.'s asst. had told me and he showed me the lupus levels

> and said that they were slightly elevated but still within range.

> He assured me I DO NOT have RA or Lupus. He said that it happens

> all the time like that, but the good news was it at least got me

> where I needed to be anyway. Yes, I was thrilled to hear that but

> still can't get past the fact that I have been worried sick for a

> month. He did a physical exam on me and looked at my list of aches

> and pains. He is pretty sure it is Osteoarthritis in my neck, thumb

> and knee. My kneecap is moving around more than it should as well.

> He gave me a better muscle relaxer (in his opinion) called Skelaxin

> (metaxalone)and put me on an NSAID called Voltaren. he said I

> should start to feel better in a couple days in my neck and a couple

> weeks everywhere else. I will go back to him in 6 weeks and if

> anything still hurts after that medicine I'll have it Xrayed. But

> he is pretty sure it is just Osteoarthritus. So that is the good

> news...I'm just livid that I had a month of stress when all they had

> to say was that they were referring me to a Rheumy because my Lupus

> level was slightly elevated, but that the RF test came back negative!

>

> Thanks for listening

> Bobbi

[Guest guest]

It is all so frustrating! I'm sorry that you had to

worry so, it kind of goes with the territory, I guess.

4 years ago when I had tested positive for the RF - I

was referred to a rheumy and while there and tested

and it came back negative - go figure? Anyhow, it has

stayed + for years now and climbing? Worry is a

crappy part of all of this, that's for sure. I'm glad

that you have a doc who is at the very least trying to

treat you for the pain assocaited with whatever is

going on with you! That is a definite plus. In a

sense, you are lucky for that! Hang in there, it will

all come about! Take care and God Bless! Kim

--- Bobbi <mom2triplets@...> wrote:

> Okay are you guys ready for this? I'll give you a

> little recap of

> my situation. A month ago I went to the dr. because

> my neck hurt so

> bad I could barely move it. I also had been having

> pain in my left

> knee and my left thumb for over a year all the time.

> So my GP ran

> an RA test. They called me back 2 days later and

> told me (In a real

> sympathetic voice) that and I quote, " Hi Honey, your

> lab results

> came back (long pause) and your levels came back

> highly elevated

> and with levels as high as yours we worry about

> lupus. I'm so sorry

> honey, keep your head up. We are referring you to a

> Rheumatologist "

> blah blah blah So needless to say I have been a

> nervous wreck for

> over a month. Writing down all my pains and where

> they are at. I

> figure, if they only tested me for RA and it came

> back highly

> elevated, then of course I have RA. Well I finally

> go to the appt.

> and he says that my RF test came back

>

NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

>

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

> !!!! I was so pissed I could not hold in my

> frustration. I told him

> what the dr.'s asst. had told me and he showed me

> the lupus levels

> and said that they were slightly elevated but still

> within range.

> He assured me I DO NOT have RA or Lupus. He said

> that it happens

> all the time like that, but the good news was it at

> least got me

> where I needed to be anyway. Yes, I was thrilled to

> hear that but

> still can't get past the fact that I have been

> worried sick for a

> month. He did a physical exam on me and looked at

> my list of aches

> and pains. He is pretty sure it is Osteoarthritis

> in my neck, thumb

> and knee. My kneecap is moving around more than it

> should as well.

> He gave me a better muscle relaxer (in his opinion)

> called Skelaxin

> (metaxalone)and put me on an NSAID called Voltaren.

> he said I

> should start to feel better in a couple days in my

> neck and a couple

> weeks everywhere else. I will go back to him in 6

> weeks and if

> anything still hurts after that medicine I'll have

> it Xrayed. But

> he is pretty sure it is just Osteoarthritus. So

> that is the good

> news...I'm just livid that I had a month of stress

> when all they had

> to say was that they were referring me to a Rheumy

> because my Lupus

> level was slightly elevated, but that the RF test

> came back negative!

>

> Thanks for listening

> Bobbi

>

>

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Thanks,

I'm going to follow the dr.'s orders and do everything he says and

take everything he says for the 6 wks. If I have any pain at all

left I will insist on further testing. I find it hard to believe

that I would have OA at 33, especially hurt this bad by it. But, he

made a strong case for it. I'm worried about my neck mostly. I

hope this works because I'm tired of not having full motion in my

neck. I have done so much research on RA now I'm going to go and

research OA and read all about it and see why I would have arthritis

at my age...I know RA effects young people but I didn't know that OA

did. The hardest part of all this, is now people think I was just

imaginging my pain. OH, It's just regular arthritus. You just take

aspirin for that. Which I'm sure after the NSAID starts working that

may be the case. But that doesn't take away the fact that I have

been in a lot of pain for several months. Hopefully this will

work. I am still wondering about Fibromyalgia, but he said he'd

worry about that after 6 wks on the meds. Anyway, I'll keep you

guys in my thoughts and prayers. I won't be posting anymore unless

things change! Thanks for all the hlep and support you have all

given me. You have been a lifesaver through this whole ordeal!

Bobbi

>

> Hello Bobby

>

> I just wanted you to know that I had pain and symptoms for years

before the

> RA factor (and damage) showed up. I was told I had carpal tunnel

syndrome,

> repetitive motion syndrome, and stress, etc. I kept thinking (to

myself of course)

> that this can't possibly be stress but doctor's in general don't

believe that

> you might know your own body. Don't give up if you keep having

pain and other

> symptoms. I also test positive for lupus but I've been told that

many with RA

> do.

>

> Take Care

> Babs

>

>

>

>

>

[Guest guest]

Just a quick question? Why will you not be posting

anymore? Just curious? Kim

--- Bobbi <mom2triplets@...> wrote:

> Thanks,

> I'm going to follow the dr.'s orders and do

> everything he says and

> take everything he says for the 6 wks. If I have

> any pain at all

> left I will insist on further testing. I find it

> hard to believe

> that I would have OA at 33, especially hurt this bad

> by it. But, he

> made a strong case for it. I'm worried about my

> neck mostly. I

> hope this works because I'm tired of not having full

> motion in my

> neck. I have done so much research on RA now I'm

> going to go and

> research OA and read all about it and see why I

> would have arthritis

> at my age...I know RA effects young people but I

> didn't know that OA

> did. The hardest part of all this, is now people

> think I was just

> imaginging my pain. OH, It's just regular

> arthritus. You just take

> aspirin for that. Which I'm sure after the NSAID

> starts working that

> may be the case. But that doesn't take away the

> fact that I have

> been in a lot of pain for several months. Hopefully

> this will

> work. I am still wondering about Fibromyalgia, but

> he said he'd

> worry about that after 6 wks on the meds. Anyway,

> I'll keep you

> guys in my thoughts and prayers. I won't be posting

> anymore unless

> things change! Thanks for all the hlep and support

> you have all

> given me. You have been a lifesaver through this

> whole ordeal!

> Bobbi

>

>

>

> >

> > Hello Bobby

> >

> > I just wanted you to know that I had pain and

> symptoms for years

> before the

> > RA factor (and damage) showed up. I was told I had

> carpal tunnel

> syndrome,

> > repetitive motion syndrome, and stress, etc. I

> kept thinking (to

> myself of course)

> > that this can't possibly be stress but doctor's in

> general don't

> believe that

> > you might know your own body. Don't give up if you

> keep having

> pain and other

> > symptoms. I also test positive for lupus but I've

> been told that

> many with RA

> > do.

> >

> > Take Care

> > Babs

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

>

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Kim:

I just figured I wouldn't post anymore because I do not have RA,

Lupus or Fibromyalgia that I know of yet. It lists those conditions

in the title of this supposrt group. I'm going to check it from

time to time to see how you all are doing. And if after 6 weeks I

continue to have problems, I'm sure I'll be hounding you all again

with questions. I am pretty convinced that I have OA in my knee and

thumb. I'm NOT convinced yet that my neck is just arthritis. Only

time will tell. If it doesn't get better I'll request an Xray.

Does Fibro show up in Xrays? Or is there a different test for that?

Thanks again for all your help

Bobbi

> > >

> > > Hello Bobby

> > >

> > > I just wanted you to know that I had pain and

> > symptoms for years

> > before the

> > > RA factor (and damage) showed up. I was told I had

> > carpal tunnel

> > syndrome,

> > > repetitive motion syndrome, and stress, etc. I

> > kept thinking (to

> > myself of course)

> > > that this can't possibly be stress but doctor's in

> > general don't

> > believe that

> > > you might know your own body. Don't give up if you

> > keep having

> > pain and other

> > > symptoms. I also test positive for lupus but I've

> > been told that

> > many with RA

> > > do.

> > >

> > > Take Care

> > > Babs

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________________

> DSL – Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

[Guest guest]

Dear Bobbi, you don't have to run off because of

that!!!! We are not so shallow as to discard you like

that! You are STILL more than WELCOME here!!! I am

sure that others agree! Bless your heart. I have no

diagnosis as of yet myself other than being crazy and

I'm not going anywhere!!!! The people here are so

supportive and informative and I'm not willing to part

with that! I hope for your sake that osteo is all that

you have, not that I would wish it on anyone but so

many of us have overlapping disease and/or symptoms.

My bloodwork is ever changing but my doc is steadfast

on it being in my head. I wish that you would

reconsider! As for fibro, I'm not sure about how they

test for that other than CSF? Others can help you

with that and many here have that. So you see you

should consider sticking around! Take care Kim

--- Bobbi <mom2triplets@...> wrote:

> Kim:

> I just figured I wouldn't post anymore because I do

> not have RA,

> Lupus or Fibromyalgia that I know of yet. It lists

> those conditions

> in the title of this supposrt group. I'm going to

> check it from

> time to time to see how you all are doing. And if

> after 6 weeks I

> continue to have problems, I'm sure I'll be hounding

> you all again

> with questions. I am pretty convinced that I have

> OA in my knee and

> thumb. I'm NOT convinced yet that my neck is just

> arthritis. Only

> time will tell. If it doesn't get better I'll

> request an Xray.

> Does Fibro show up in Xrays? Or is there a different

> test for that?

> Thanks again for all your help

> Bobbi

>

>

> > > >

> > > > Hello Bobby

> > > >

> > > > I just wanted you to know that I had pain and

> > > symptoms for years

> > > before the

> > > > RA factor (and damage) showed up. I was told I

> had

> > > carpal tunnel

> > > syndrome,

> > > > repetitive motion syndrome, and stress, etc. I

> > > kept thinking (to

> > > myself of course)

> > > > that this can't possibly be stress but

> doctor's in

> > > general don't

> > > believe that

> > > > you might know your own body. Don't give up if

> you

> > > keep having

> > > pain and other

> > > > symptoms. I also test positive for lupus but

> I've

> > > been told that

> > > many with RA

> > > > do.

> > > >

> > > > Take Care

> > > > Babs

> > > >

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> >

> >

> > __________________________________________

> > DSL – Something to write home about.

> > Just $16.99/mo. or less.

> > dsl.

> >

>

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

In a message dated 12/6/2005 4:18:03 PM Central Standard Time,

ksamedifference@... writes:

> CSF?

what is a " csf " ? i'm new to all these abrevs.

thank you, Gayle

[Guest guest]

I appreciate your kind words. I seem to be addicted because I have

checked the posts 3 times today! I would have missed the post about

OA. I will keep checking in. I have only been on the NSAID for one

day and can already move my neck more than I have in over a month.

Still not very far, but much better already. So maybe my neck is

OA...who the hell knows at this point! LOL

> > > > >

> > > > > Hello Bobby

> > > > >

> > > > > I just wanted you to know that I had pain and

> > > > symptoms for years

> > > > before the

> > > > > RA factor (and damage) showed up. I was told I

> > had

> > > > carpal tunnel

> > > > syndrome,

> > > > > repetitive motion syndrome, and stress, etc. I

> > > > kept thinking (to

> > > > myself of course)

> > > > > that this can't possibly be stress but

> > doctor's in

> > > > general don't

> > > > believe that

> > > > > you might know your own body. Don't give up if

> > you

> > > > keep having

> > > > pain and other

> > > > > symptoms. I also test positive for lupus but

> > I've

> > > > been told that

> > > > many with RA

> > > > > do.

> > > > >

> > > > > Take Care

> > > > > Babs

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > > > removed]

> > > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > > __________________________________________

> > > DSL – Something to write home about.

> > > Just $16.99/mo. or less.

> > > dsl.

> > >

> >

> >

> >

> >

> >

>

>

>

>

> __________________________________________

> DSL – Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

[Guest guest]

cerebral spinal fluid

--- rainbowgayle@... wrote:

> In a message dated 12/6/2005 4:18:03 PM Central

> Standard Time,

> ksamedifference@... writes:

>

> > CSF?

>

> what is a " csf " ? i'm new to all these abrevs.

> thank you, Gayle

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.