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Old 08-03-2009, 02:08 AM   #1
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BobbaBlu HB User
Help please!

Hello, I was posting on another board and someone suggested I ask my question here. It is thought I may have Lupus but I've been 'officially' diagnosed with ME/CFS and Fibromyalgia.

I had 1 blood test which showed elevated Immunoglobulins (IgM) and my GP didn't know why and sent me for another blood test. They printed off the results for me and I don't really understand, should someone shed some light please? (I'll type it out exactly as it came on the piece of paper)

Serum protein electrophoresis;
Increased alpha 1 globulins
Anti-nuclear factor negative

As ANA is negative, I assumed it's unlikely to be Lupus. What could increased alpha 1 globulins mean? My GP surgery glanced at the blood test results and focused on my bowel issues and she's referred me to a gastroenterologist. Is it worth going back to my dr and asking to get referred to another specialist too, perhaps a rheumatologist?

Many thanks!

 
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Old 08-03-2009, 02:45 AM   #2
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Help please!

BobbaBlu, hello & welcome! I'm only a (dumb) patient so please take what I write in that light, OK? I just read that increased alpha-1 globulins can indicate a chronic or acute inflammatory condition such as SLE or rheumatoid arthritis. There are chronic inflammatory BOWEL diseases, and I have *no idea* whether that test can go positive in those GI conditions. But sicne you have problems, I think it makes sense that you see a gastroenterologist either way...

As for whether ANA can fluctuate between positive & negative, in diseases that are prone to "flares", that may be possible, but honestly, I've never known for sure! You could ask every dr. you see upcoming for more insight into whether ANA can go up & down.

As for whether ANA can be negative in *systemic* lupus: YES, it definitely can, BUT it's rare. Something like 95%+ of patients who meet 4 or more ACR criteria for systemic lupus have positive ANA. (See the "sticky post" at the top of the thread list for the criteria). The main exceptions are believed to be those with the "subset" (variant) called Ro-lupus, in which *anti-Ro* autoantibody is the one that's positive, with ANA remaining negative in perhaps 1/3 of that subgroup.

I fit the ANA exception, and it took me a horribly long time to get a Dx. I had severe episodic GI problems for almost 25 years. I'd had shin & joint pain episodically from adolescence. Next came long, miserable episodes of GI malabsorption. Then urinary urgency and frequency. Migraines. Anemia. Elevated ESR. Fatigue. Neuro-like tingling. Last to arrive, in my late 30's, were episodic, nonscarring, nondepigmenting targetlike lesions on upper arms & back. Finally, after MANY dermies & deep-punch biopsies, rheumies, gastros, etc., I was Dx'ed by a teaching hospital rheumie and a dermatopathologist with "subacute cutaneous lupus erythematosus", abbreviated SCLE, positive for anti-Ro and negative for ANA. FYI, in terms of typical severity, SCLE is believed to *typically* fall somewhere between discoid & systemic lupus, although in some, it can be as severe as classic SLE, with major organ involvement.

So... can episodic GI problems be seen in lupus? My local drs. never seem to think it could, but my *metro rheumie* said ABSOLUTELY. Thing is, one needs to rule GI-only diseases/conditions in or out, to make sure it's not one of those.

Do you have anything ELSE going on that could help with a Dx? Rashes can be GREAT, if you know what I mean...! Deep-punch skin biopsy with additional immunofluorescent stain tests can very often (not always) determine if a rash is lupus-specific, which is VERY useful to know.

I hope something above is useful & that others chip in soon, too. I also hope you keep posting here: we're good company, if I do say so myself. Let us know how you're doing, OK? Meanwhile, sending my best wishes, sincerely, Vee P.S. Hang in there!

Last edited by VeeJ; 08-03-2009 at 03:01 AM. Reason: spelling, grammar, etc.

 
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Old 08-03-2009, 07:23 PM   #3
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heidiclouser HB User
Re: Help please!

I too have SCLE. A skin rash was also my gateway to a dx. My ANA fluctuates between being positive and negative. It's never very high....around 40. My daughter who doesn't have lupus has an ANA of 40. And there are many other tests doctors use. So go to the gastro person and see if you can cross that off the possible list.

 
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