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Hi all. I have been having what my doctors have thought were fibromylagia-like symptoms for 5 years now. They include: muscle and joint pain in all four body quadrants, sharp pains in one leg that feel like someone is periodically running really sharp nails across my skin, muscle tightness, fatigue, concentration problems, joint hypermobility/connective tissue laxity, recurring illnesses especially lung infections/bronchitis/pneumonia that don't seem to respond to antibiotics or treatment, recently acquired allergies to metals, adhesives (tape, bandaids, etc.), mold, had pleurisy on and off on a monthly basis for ten years (I know, a long time!), hives and itchy rash all over my body with doesn't respond to zyrtec, benadryl, or hydrocortisone creams. There is probably more but sometimes I forget some of it! I've been tested 3-4 times over the past 3 years for ANA, and always had normal results. The only abnormal result last time was high C-reactive protein. I feel like everytime I see a new specialist for something they look at my list of symptoms and ask if I have been screened for lupus. Is it possible to have lupus but not have a positive ANA? Are there other tests that can be done to give me a more deinitive answer?

Thanks,
Karen
Vee,

Thanks so much for your response. Yes, that does sound very similar to what I have been experiencing. Fortunately, I already live in Manhattan, so as you said should perhaps have an easier time finding a specialist who is experienced and committed to working with me to figure this out. Also, perhaps fortunately, I am used to the run around with doctors since I've been dealing with/tentatively diagnosed with what they think might be fibromyalgia for 5 years now. I've become good at ditching doctors who aren't willing to work with me and doing my own research since many of them are not knowledgeable about these sorts of things. I have a rheumie now, though haven't been back to her since the itching/hives and the lung problems flared up because I wanted to try to see if I could control them through treatment from my PCP and allergist just in case they weren't related to the fibro/auto-immune stuff. I have one more round of prescriptions from my allergist that I just picked up yesterday. I'm gonna give these a try for the next month and if that doesn't clear up the lung/hives problems then I will make the assumptions that it's not as related to allergies as they think and seek consultation from the rheumie. Oh I think I also forgot to mention that I have what they are calling "mild" asthma (doesn't seem all that mild to me!), including shortness of breath, chest tightness, burning feeling in my lungs, that isn't necessarily related to a lung infection; in other words it's been constant for the past couple months and I'm not "sick" in any other way. But I also have all normal results on the tests for asthma they've given me, though I'm on advair just in case and it seems to make it manageable. I have come across SCLE in my research in the past but never gave it much thought because at the time I had no skin involvement. I'll look into that more and also consider seeking out someone who can perform the tests you mentioned. Thanks so much for your advice and support.

Take care,
Karen
Hi Karen,

I have not been dx'd with Lupus but with Undiff. Connective tissue disease. Negative tests results does not alway mean that the person does not have the disease or that it is developing. Most people do have certain markers to one of the more specific tests. But, I have read and been told by my doctor that 5 percent of patients seldom or ever test positive. He is considering that I might be part of that 5 percent.

It was very hard for me to find a doctor who would agree on that. It has been a long 9 years just to get the dx I have now. I am currently taking medication..prednisone and plaqenuil and feeling somewhat better.

Your best bet is to find an open minded rheumie who is well educated. Easier said then done but Veejs advice is right on the mark.

Good luck to you. I hope you don't have anything but I hope you find some relief soon.

Take care...deb





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