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Confusing symptoms and test results

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Old 05-03-2009, 01:51 AM   #1
Join Date: Feb 2005
Location: canada
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cardani HB User
Confusing symptoms and test results

Hi everyone! So this has been a long few weeks, just because I don't know what is wrong with me. It began with just a high fever and severe aches. Then it turned into a tonisllitus and sinus type infection, which improved with some antibiotics, but then I began getting sharp chest pains, and then a stomach flu, it seemed like I was getting sick with everything I came into contact with. After the beginning of the fever I had an elevated white blood cell count, and my doctor noticed a rash on my face, I thought that the antibiotics would make me healthy and new again like normal, but they didn't really do anything at all for a lot of my symptoms (fever, rashes, aches). I kept going back to the doctor, and since he kept noticing the rash on my face, he brought it up, to tell you the truth I hadn't really noticed it, I thought it was just from feeling sick. Anyways he ordered a bunch of blood work for autoimmune diseases. I got a call from him the other day saying that he was sending me to a rheumatologist because one test came back positive, and that he wasn't sure if by itself it would mean anything. I am just wondering what the rheumatologist will do or ask. I have some pictures of a couple rashes that have been appearing on my body, should I bring those? Do rheumatologists usually only meet with you once, or is it ongoing?

My doctor seems to have ideas of what it might be, but doesn't really tell me his thoughts, I guess he doesn't want to make me worried over nothing. My grandmother was just diagnosed with Sjogrens syndrome. Thanks for your time! Also I am not sure which test it was that was positive :s Sorry for being so vague. Should I meet with my family doc before I meet the rheumatologist so I know more of what to say or ask? I am really lost in all of this.

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Old 05-03-2009, 06:08 AM   #2
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Re: Confusing symptoms and test results

Cardani, hello & a big welcome! Obviously I only a patient, so anything I say, please take with big grain of salt! That said---

1. Take pics of body rashes along? I would. While pics aren't diagnostic, they could help focus rheumie's thinking & help him/her lead off with more pointed questions & better-focused first round of tests.
2. What rheumie will do/ask: Definitely he/she should ask for lifelong medical history. Possibly perform a physical exam. Probably order new blood tests & urinanalysis (in U.S., rheumies often prefer to use their "own" labs, ones known to be more skilled at autoimmune tests).
3. In U.S., you may go back & forth to a rheumie episodically while rheumie & GP are still working on a Dx. If Dx'ed with lupus or similar autoimmune, in U.S., you have scheduled rheumie check-ups, the frequency determined by your severity, plus ad-hoc rheumie appointments when needed. Here you're also sent to other specialists, only if & as warranted, e.g., cardiologist, pulmonologist, nephrologist, neurologist, etc.

In your shoes, I'd also look for lupus hardcovers in your local library. British author: Dr. Graham Hughes. Amercian authors: Dr. Daniel Wallace &/or Dr. Robert Lahita.

About your body rash: I'm curious what it looks & feels like, when it occurs, etc. All but one of my recurrent rash lesions were on torso/upper arms, non-scarring, non-itching. Through deep-punch biopsy and immunofluorescent stain tests, the rash was determined to be lupus-specific.

My overall Dx was "Ro-lupus", with the only circulating autoantibody found = anti-Ro. INTERESTING YOU MENTION YOUR GRANDMOTHER HAS SJOGREN'S! I say that because *anti-Ro* autoantibodies are seen in both Sjogren's and lupus; and people who test positive for *anti-Ro* may have Sjogren's, lupus, or both.

I think you're doing a smart thing seeing a rheumie, and I hope you keep at it. And I hope you keeping posting here: lots of fine people, with good info & goodwill to share. Bye for now, with warm wishes, Vee

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