Test results

January 9, 2005

I don't really have any answers for you and hope your appointment goes well.

I noticed you mentioned that your daughter's psych said her only stress

appears to be her physical condition. This may not apply to her, but I just

wanted to mention to you that there is a new antidepressant caused Cymbalta that

can help with things like pain that is caused by fibro. It helps with physical

symptoms along with emtoional symptoms. Good luck. Kim

In a message dated 1/8/2005 11:07:18 PM Central Standard Time,

Kelleka@... writes:

Part of me is happy because IF these results are accurate, then she doesn't

have this. Part of me is frustrated because I know I will hear " reduce

stress " when Krystal doesn't do anything, and her only stress by her account,

mine and her psychiatrist is her current physical condition.

January 9, 2005

--

HI ,

First I can say I and I know many others here completely understand

the frustration you are going through. Of course I am not a doctor,

but from what I have learned about this illness, is that there is no

specific test that can determine if your child has JRA. It is a

process if illimination, as well as gathering information about

symptoms. Blood tests for inflammation can help in the evaluation of

everything else, but it is by no means an exact answer...this is

what is so frustrating about this disease. I know there are many

kids who have completely normal lab results, but have severe pain

and swelling and do indeed have JRA. I am not trying to worry you,

and I really do hope that it is not JRA that your daughter is

dealing with. I also truly hope you find an answer soon. Take care.

Jodi, Bronson, systemic, age 9

- In , " Kelleka " <Kelleka@c...> wrote:

> I am so behind on the list--passing around a bug, got hit with an

ice storm (powers back on and finally got the mess cleaned up.

> Anyway, Krystal's appointment to discuss her test results is

Monday at 4 pm. In the meantime, we received this letter from ARCK

Friday. Leaves me with lots of questions.

> The letter states:

> ANA screening-weakly positive-borderline but specific ANA

antibodies are all negative.

> Rhuemetoid factor 7.6 range(0-13.9)

> anti-CCP=0-negative-CCP is 95% specific for rhuemetoid arthritis

> TSH-1.746 (range.360-5.800)

> CRP-an acute inflamatory marker is negative at 0.4 (range 0-4.9)

> This lab work does not indicate lupus, rhuematoid arthritis, or

acute inflammatory disease at this time. We will discuss these

results on your return visit.

> Part of me is happy because IF these results are accurate,

then she doesn't have this. Part of me is frustrated because I know

I will hear " reduce stress " when Krystal doesn't do anything, and

her only stress by her account, mine and her psychiatrist is her

current physical condition.

> Questions I have are--if these results are accurate, how could

things have changed so drastically in 6 years? My understanding is

that JRA doesn't go away and there is no cure--that there is flare

ups and remission.

> If these results are accurate, then what is causing the

rashes, fevers, stomach problems, chest pains, eczema, not to

mention the pain, swelling, and stiffness? My limited understanding

at this point is that fibro does not cause these things. These have

each been seen individually, and the drs have never been able to

trace a cause for this.

> If these results are accurate, then what caused her uveitis

when she was younger?

> I hope to find out more Monday at her appointment, but to my

mind right now, this letter with these results do nothing but raise

more questions.

>

January 9, 2005

Hi ,

It will be very interesting, indeed, to see what the rheumy has to

say about the labs and what, if anything, to do next. The slightly

positive ANA would sure explain the uveitis/iritis. The CRP means

that at the moment in time when the blood was drawn, there was very

little or no inflammation going on. Did they do a sed rate, the

labs would say ESR. That test is a more generalized version of

inflammation and would show if there's been any inflammation in the

last few weeks.

Does this one set of results determine JRA or not? NO, it doesn't.

If she got labs like this taken every month or every 3 monhts or so

and they still looked like the same results, I still wouldn't know.

There are so many components to this disease that it is sometimes

like chasing a moving target.

Take one day at a time and write down everything that goes on with

Krystal and hopefully a recognizable pattern or group of symptoms

may emerge.

We had one rheumy here, who actually claimed she sees kids, examine

Hunter and do labs and then wrote him off as " not having any type of

rheumatological problem " . That was a mere 6 months prior to him

being in a wheel chair because he couldn't walk.

You are correct that JRA does not go away. It may go into remission

for any length of time, short or long or very long term.

Keep searching and we're here for you.

Stacia

January 11, 2005

Hi Jodi,

That actually is a relief. The first rhuemetologist wasn't so concerned about

the test results as alleviating the suffering. This one, I got the initial

opinion that the results were the be all end all of diagnosis. The original

rhuemy said that he was happy to NOT see positives on some of the tests because

that opened up areas that Krystal definitely wanted no part of. Since her appt

yesterday, I'm feeling more confidence in the rhuemetologist--now to see if it

is justified. For Krystal, it isn't confidence in the rhuemetologist but

frustration with herself for not being conclusive, believing it would make

things easier for her.

Re: Test Results