Re: [) rheumy visit-kinda long

[Guest guest]

>

> Hello everyone. I went to my first rheumatology appt. on Monday.

I feel very discouraged and confused after my visit. The

rheumatologist examined me and my lab results/x-rays taken two months

ago, and said I do not have RA, but that I have fibromyalgia, and

explained what it is- that I am ultrasensitive to pain and fibro is

caused by sleeping disturbances. I pretty much already knew I had

fibromyalgia from the symptoms/pain I had been having. BUT, not

having RA? I kept asking them, well, what about my terrible joint

pain, my low-grade fevers (that happen to be random) my terrible

fatigue and my Ra factor being positive- I think my titer was 21 or

22? It isn't that I WANT RA, certainly, it is just that I thought

that it was all making sense to me, but now I don't know what to do.

Should I seek a second opinion, or wait?

Kristi--

Getting a first diagnosis is frustrating. I believe a titer of 21 or

22 for RA is pretty low. I think that normal is considered below 20.

(At least that's what it is in the lab I use.) I've also read

several posts on this group and others from people who have very high

RA factors--well over 100. That being said, it is very possible to

have RA and not have a positive RA factor. They call it sero-negative

RA. That's what I have.

I was pretty lucky, in that I had a lot of obvious swelling in my

joints, so my Rhuemy diagnosed me rather quickly. Do you have

swelling in your joints, or just joint pain? From everything I've

read, there are many people with little or no swelling, and I'd guess

people with negative RA factor and no swelling, have a much harder

time getting a diagnosis.

I'd suggest setting up an appointment to get a second opinion if you

really feel like there's something else going on--especially if you

don't have a good feeling about the rhuemy you just saw.

Good luck and hang in there!!

dordale

[Guest guest]

Hello Kristi! How are you doing? I hope that you are

having a good day! I'm sorry that your rheumy appt.

left you feeling discouraged and confused.

Unfortunately, several of us have been exactly where

you are at. I'm sorry about the DX of fibromyalgia. I

hope that you don't have RA! I also was recently DX'd

as having fibro, it is somewhat a relief to be

validated as not crazy but, now what? In my situation

everything stays pretty well the same, nothing for

pain, stress, sleep. However, I'm surrounded here by

idiots most the time. I also have a +RA titer but,

mine is from another condition unrelated, long story.

I too, have low grade fevers, spinal problems; too

many to list. Hang in there! I know that it can be

all so overwhelming at times, especially when you're

not feeling well. My philosphy is that with the DX of

fibro, at least we are in the door. They either have

to rule it out or something else in, but it is a

start! That alone is worth a lot, the peace of mind

that will eventually come knowing that it isn't all in

our head is worth everything, it helped me settle down

and be able to focus on my stressors! I also exercise

in a pool! It helps a lot. You can ask your doc for

a script to your local Y.M.C.A. and use their therapy

pool for free! I highly recommend it - it does work.

When I first thought about trying to exercise per

doc's recommendation, I thought he was a nut, however;

after you get in and start moving a couple days a week

- start slowly, not to over do it!!!! I'm glad that

you are going to an eye doc! The rheumy can't help

with that too much, I would think? Not a 100% sure.

Others can probably answer any questions that you may

have regarding that issue. Hang in there, I wish you

the very best. Good luck and take care. Kim

--- siofra520 <siofra520@...> wrote:

>

> >

> > Hello everyone. I went to my first rheumatology

> appt. on Monday.

> I feel very discouraged and confused after my visit.

> The

> rheumatologist examined me and my lab results/x-rays

> taken two months

> ago, and said I do not have RA, but that I have

> fibromyalgia, and

> explained what it is- that I am ultrasensitive to

> pain and fibro is

> caused by sleeping disturbances. I pretty much

> already knew I had

> fibromyalgia from the symptoms/pain I had been

> having. BUT, not

> having RA? I kept asking them, well, what about my

> terrible joint

> pain, my low-grade fevers (that happen to be random)

> my terrible

> fatigue and my Ra factor being positive- I think my

> titer was 21 or

> 22? It isn't that I WANT RA, certainly, it is just

> that I thought

> that it was all making sense to me, but now I don't

> know what to do.

> Should I seek a second opinion, or wait? I know how

> important early

> and aggressive tx of RA is, so I hate to wait if I

> really have it and

> they aren't diagnosing it. I am off all the meds

> > now, as they advised to discontinue them. They

> did test me for

> lupus, even though my ANA was negative, and the only

> blood test that

> indicated anything was wrong was my RA factor being

> positive. I

> don't get those results back for a week or more. I

> slept for 13

> hours yesterday, was up for 7 and back to sleep. I

> am confused.

> Does anyone have any advice?

> > Thanks so much!

> > Kristi

> > P.S. For those of you who have been so helpful

> in your advice

> about my eyes- I have an appt. on Sat. for the eye

> dr. as the rheumy

> didn't address that problem even after asking about

> vision

> problems.

> >

> >

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

> > Do you ?

> > Next-gen email? Have it all with the all-new

> Beta.

> >

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

> removed]

> >Kristy,

> If you are not comfortable with the results of this

> visit...then go

> have a second opinion....in a different office

> tho...not an

> associate! Some people have a very hard time being

> diagnosed and for

> various reasons...sometmes years... and that just

> makes everything

> harder for them. I understand about wanting to start

> treatment in a

> timely manner to lessen the damage done, I'd opt for

> a second opinion

> just on that basis alone...to be sure that you have

> done all that you

> could. Perhaps..the second opinion will be

> different, perhaps it

> won't but maybe you will feel better about it...and

> peace of mind is

> worth a lot! Good luck! And let us know what the

> opthamologist says

> about your eyes! jenna

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Kristi,

By all means, get a second opinion.

But it's important to keep a few things in mind. One could have a positive

RF and not have RA (especially when the titers are low - and yours sound as

if they probably are low or borderline). Fevers are not specific to RA. One

can have joint pain and not have RA. Fibromyalgia can cause joint pain and

stiffness, but it will not cause the profound swelling RA does.

Do you have or have you had significantly swollen joints? Were your sed rate

or CRP elevated? Did you have an anti-CCP test?

The rheumatologist does not want to give you an RA diagnosis and expose you

to the potentially toxic medications used to treat RA unless he/she is

reasonably sure of the diagnosis. Too, an RA diagnosis can have a

dramatically negative impact on your insurability.

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

[ ] Re: [ ) rheumy visit-kinda long

> Hello everyone. I went to my first rheumatology appt. on Monday. I feel

> very discouraged and confused after my visit. The rheumatologist examined

> me and my lab results/x-rays taken two months ago, and said I do not have

> RA, but that I have fibromyalgia, and explained what it is- that I am

> ultrasensitive to pain and fibro is caused by sleeping disturbances. I

> pretty much already knew I had fibromyalgia from the symptoms/pain I had

> been having. BUT, not having RA? I kept asking them, well, what about my

> terrible joint pain, my low-grade fevers (that happen to be random) my

> terrible fatigue and my Ra factor being positive- I think my titer was 21

> or 22? It isn't that I WANT RA, certainly, it is just that I thought

> that it was all making sense to me, but now I don't know what to do.

> Should I seek a second opinion, or wait? I know how important early and

> aggressive tx of RA is, so I hate to wait if I really have it and they

> aren't diagnosing it. I am off all the meds

> now, as they advised to discontinue them. They did test me for lupus,

> even though my ANA was negative, and the only blood test that indicated

> anything was wrong was my RA factor being positive. I don't get those

> results back for a week or more. I slept for 13 hours yesterday, was up

> for 7 and back to sleep. I am confused. Does anyone have any advice?

> Thanks so much!

> Kristi

> P.S. For those of you who have been so helpful in your advice about my

> eyes- I have an appt. on Sat. for the eye dr. as the rheumy didn't address

> that problem even after asking about vision problems.