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Another Newbie here too

381 Views 12 Replies 7 Participants Last post by  Fibrobugsme

Hello all,

I'm new today to this group and I thank you for allowing me in. I have not yet been diagnosed with Lupus and may never be really. So far they have found that I have Fibromyalgia and something they're currently calling Non specific Inflammatory Polyarthritis. The last time I saw my GP and my Rheumatologist I took pictures of my rash on my face that doesn't always show up. I have tested negative twice to the ole ANA test and an RA test as well. They're just not sure right now if they'll add Lupus to my "resume" but they do know whatever my problem is, it's Lupus like and systemic. I go for more blood work again in May so we'll see what happens then.

I hope you're all having a great day!!
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Hello and welcome :)

I hope you will find the site useful for support and advice. There are a great many wonderful people here all willing to help in whatever way they can.

I presume that although you have no "formal" diagnosis, you are still being treated as you would be for lupus or another connective tissue disease?

bye for now,
Hi again Sharon,

It's a pity that you aren't being treated with anything other than pred from time to time. I mean, obviously, I don't know your whole story so your docs may have a reason for not wanting to do anything else just yet. Maybe there really isn't enough to support the "lupus like and systemic" but still, it does make me wonder.

I'm also wondering, if you're ANA has been consistently negative - It can remain negative for a good while and on some patients (only between 2 and 5%) never becomes positive - anyway, I'm wondering if it might not be worth asking if a skin biopsy could be useful. Occasionaly a biopsy of unaffected, unexposed skin (for example from the stomach or buttocks) can clinch diagnosis. It is not sure, nothing with lupus is, but is worth trying.

As for the questions on bloods.... well no-one can really answer that. There is no "norm" in lupus. Some of us will have very high inflammation markers at times and others will barely rise despite significant inflammation. My rheumy can "see" inflammation around tendons when doing an ultrasound for example and yet I rarely have any inflammation markers in bloods. The only time I did was before diagnosis and at that time she told me that it was no way near high enough to be from an autoimmune disease - turned out she was wrong as other tests then revealed. Since then she listens to what I'm saying and uses bloods to monitor other activity but doesn't presume I'm doing well because inflammation doesn't show up.

hope that helps a bit,
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