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Old 01-12-2012, 06:33 AM   #1
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Question Any advice for next appt w/rheumy... ANA pos/speckled pattern and elevated ESR.

Hello,

I have had two appointments with two different rheumatologists because they have had completely different approaches. One is using the slow and methodical approach and has only discovered a vit D deficiency after doing a few tests. He started me on 50,000 IU weekly to see if that helps the chronic pains (it has not so far). The other doc seems quicker to form an opinion, viewed the same test results, and felt strongly that I probably had fibromyalgia after completing an exam. However he wanted to test some more in the mean time.

So far I've had the following tests done (and all are within normal range): TSH, rheumatoid factor, sjorgen's, hepatitis C, lupus anticoagulant screen, metabolic panel, and anticardiolipin antibodies.

The only results out of range, besides the vit D, were an elevated ESR and twice my ANA has been positive. The first time it was done by my GP so I don't know the details, but the most recent test was in a speckled pattern (I'm sorry, but I have forgotten the titer).

I have a follow-up appointment in a few weeks...does anybody have any recommendations on tests that I should request, questions to ask the rheumy, or any other advise?

From what I saw online, a positive ANA and elevated ESR would not be related to fibro since fibro is not a inflammatory condition. Could there be something else going on or are these common results for someone with a lot of different symptoms and muscle pain?

Thanks so much for taking the time to read this.

Last edited by maiyen; 01-12-2012 at 06:36 AM.

 
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Old 01-12-2012, 08:49 AM   #2
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Re: Any advice for next appt w/rheumy... ANA pos/speckled pattern and elevated ESR.

From personal experience, stay with the one who is going slowly and carefully. Fibro has become a "garbage can" diagnosis....if you don't know what is wrong, diagnose fibro...no can prove or disprove it....so they can't get sued if it turns out you have something really wrong(and die and then they get sued).

The only way to really diagnose autoimmune is to go slowly and watch and wait. My rheumy was treating me for years for OA....I thought I was developing something autoimmune...but he waited and watched so that the "little things" were what he came to notice. And slowly but surely, he diagnosed RA and then secondary Sjogrens on top of it. And I am sero-negative meaning I have no positive disease specific test results....but I do have the elevated ESR, elevated white cell count, low hemoglobin, and low hematocrit. My primary doc knew of these tests and thought nothing of them as I was always getting sick with something but to the rheumy, when he saw these tests rise and fall with the earliest symptoms of RA rising and falling with them, he knew.

Autoimmune is so hard because it takes finding the pattern that underlies the disorder and it can be very small changes that accumulate over time that define them. And it is so important to treat early that if you wait for the full blown tests to become positive, you've lost valuable time when you could be treating.

I remember reading about lupus back in 1960's when the average time to diagnose was 12-17 YEARS because they waited for a single blood test to become positive...and they wasted so many years when they could have been treating. No wonder it was so fatal back then. Now, they watch for the earliest changes and even the little stuff becomes important and can send a doc in one direction or another. Now, diagnosis of lupus is down to 2-3 years and is much better treated and has become a chronic disorder and not a rapidly fatal one like it was when they wasted 17 years watching you go down hill.

So I have come to like and greatly appreciate the doc who watches and waits but feels like something is going on. A doc who jumps on the fibro band wagon is telling you he is too busy to watch and wait and shouldn't be a rheumy!

Doctors like to fix what is wrong. It takes a truly unusual individual who is willing to wait and watch to try to make a diagnosis. A good one is worth their weight in gold. But so many go with the rapid diagnosis doc because we want answers....even if they are wrong. Having had a couple of those in my past, I love the slow and methodical doc who wants to get to know you and get the correct diagnosis.

Hope this helps.

hugs.............Jenny

 
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maiyen (01-12-2012)
Old 01-12-2012, 07:14 PM   #3
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Re: Any advice for next appt w/rheumy... ANA pos/speckled pattern and elevated ESR.

Hi jenny,

You have given me some good information. Thanks for sharing your personal experience and offering your opinion on which rheumy would be the better option. It sounds like you've been through a lot trying to get the proper diagnosis. I'm glad that you finally have some answers...and the right ones at that. I hope that your treatment is going well and you're feeling better now.

I have heard fibro being thrown around a lot. And to be honest when I first got the diagnosis, I was happy at the thought of having some kind of conclusion, but also disappointed because the appt was unlike what I thought it was supposed to be. I had always heard that a rheumy should not make any quick assumptions, but rather get to a diagnosis by using multiple variables like symptoms and test results until all of the pieces of the puzzle come together. And here I was at the first appt. I admit that I was very skeptical, but I'm a pessimist too

Your comments help a lot, thanks again! And take care

 
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