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mecswim 11-25-2012 03:02 PM

is it possible i have lupus? help please!!!

So over the past few years Ive been really sick and the drs cant figure it out. I have had problems with my joints for awhile because i was a competitive swimmer but then I got pericarditis, a year later I got an acute case of glomerulonepritis. The past year I have been having a really hard time with my joints, last year it was both hips and i had to get steroid injections and now its my feet. Whenever I try running they hurt so bad and swell up. I go through like flare ups, I got stung by a bee in my foot and both my knees swelled up and I couldnt walk it was so painful. Then a couple weeks ago I got sick, really sick and my feet starting hurting so bad in the morning I couldnt walk on them and I developed little nodules on my fingers. My eyesight has also gotten way worse and starting to make me worry it seems to be deteriorating quickly. I am only 23 but my body feels like its at least 60 and I am always tired. Ive had tests to see if I have RA or another autoimmune but my blood work came back relatively normal. Any one have any ideas on wha could be going on, would appreciate any feedback!

Sabbathblood 11-26-2012 03:05 AM

Re: is it possible i have lupus? help please!!!
Lupus is a very hard thing 2 CORRECTLY diagnose as it mimics so other illnesses. I WOULS say it sounds like u have an autoimmune condition but wouldn't like 2 say whether or not I thought it was lupus, RA or anything like that. I would definitely go back 2 u're GP as u need more bloods done, even scans, ultrasounds etc It doesn't sound like they've taken things very seriously, especially when they've basically thrown medication at u without being really sure what's up.Blood results coming back near on normal doesn't indicate there is no problem, it's quite possible 2 have normalish bloods, even with autoimmune illnesses (eg, I have lupus, RA, APS etc but my ANA, which is supposedly a good indication of lupus, is positive 1 minute, then negative the next, even when I'm in full on flare lol!). Just go back & tell him u want 2 b referred, don't b fobbed off & put u're foot down, after all, we pay their wages. Good luck.

VeeJ 11-26-2012 05:34 AM

Re: is it possible i have lupus? help please!!!
Mecswim, have you read all the "sticky posts"? They're under the yellow "Post a Question" button. BTW, wild swelling reactions to insect bites is one of the "alternative criteria", so make sure you read those. (Me, too. Bee stings used to make my limbs double or triple.) Also, the one on antiphospholipid syndrome (APS). (Oh, heck, read 'em all!)

Here's how I understand certain aspects of the sticky posts.

The 11 diagnostic criteria don't have to be met simultaneously, you can meet them over time. Envision checking each off in indelible ink, once met. The criteria don't include all possible symptoms or tests that might be positive. Instead, they're the things that have been proven to be the most useful in distinguishing lupus from other conditions.

A dr. saying that your labs looked more or less OK doesn't prove anything if the "right" labs weren't run. You should start getting copies. And even if all appropriate AI tests were done, subtances being tested for (autoantibodies, serum complement components, etc.) can wax and wane as conditions flare and recede, so the timing of the bloodwork can count. And not all labs are good at performing these tests; my rheumatologist uses only labs who specialize in doing the AI tests.

Only a few autoantibodies are listed in the criteria, but many more can occur. The few autoantibodies that ARE included are the ones considered the most specific to lupus. (I ended up with ones NOT included in the criteria: anti-Ro and anti-La---silly me---that totally confounded my suburban drs.)

Your finger nodules could be very useful. I thought of calcinosis, but I bet there are many other possibilities.

You could borrow library books. The best lupus books cover lupus, but also differential diagnoses like scleroderma, MCTD, UCTD, RA, Sjogren's, vasculitis, etc. An amazing thing I read in one such book was the account of a group patients in a rheumatologist's practice who initially presented as ANA-negative but were dx'ed with lupus anyway. After he followed them for years, they eventually resolved into 4 groups: antiphospholipid, kidney lupus as confirmed by kidney biopsy, patients who'd taken steroids so long that their ANA had disappeared, and ANA-negative lupus aka Ro-lupus (very rare).

My point here is that there are people diagnosed with lupus who don't meet the ANA criteria "tidily", and some who don't even meet 4 yet still have the dx. I imagine the same holds true in other AI's and other conditions, that there are outlier patients who don't tidily fit into the most classic patterns.

I can't know whether this is lupus, close cousin, or something else completely. But I do think seeing a rheumatologist makes sense, plus other consults as needed---like nephrology, possibly cardiology too. Personally I'd put kidneys at the top of my list of concerns, and anyone who doesn't address your past glomerulonephritis directly & quickly, I'd flee.

I hope you post anytime the mood strikes & also let us know what happens next. We're only patients but have a lot of personal experience to share. Bye for now. Best wishes, Vee

VeeJ 11-26-2012 06:47 AM

Re: is it possible i have lupus? help please!!!
Mecswim, I remembered after I posted having read about "rheumatoid nodules". You could also visit the Arthritis board, where you'd find more about RA & its diagostic criteria. I believe in RA, ANA is positive way less often than in lupus, also that RF doesn't have to be positive.

I think any rheumatologist worth his salt would start from scratch with you, but I thought above might be useful reading, too. Bye, Vee

mecswim 11-26-2012 02:49 PM

Re: is it possible i have lupus? help please!!!
Thanks, Im having a really hard day today. I have an appointment with a rheumatologist in 3 weeks, I just dont feel like im going to get anywhere because I never have with my GP. But I started walking daily becasue I cant run anymore and my ankles and knees now hurt so bad I just want to cry, and its just walking nothing strenuous. I am really frustrated and in pain and just want someone to listen to me

VeeJ 11-26-2012 03:26 PM

Re: is it possible i have lupus? help please!!!
Hi. My first rheumatologist was a transcendent disaster. I then saw a metro teaching hospital rheumatologist who ran circles around all my previous drs. There are fine doctors out there, we just have to find them.

My shins were a chronic sore spot (bad pun) from age 13 to the point I was diagnosed decades later. Like you said, mere walking could cause agony. I think all you can do when that happens is to kick back.

For years, I kept in file a list of doctors from an annual magazine feature. Had I suspected lupus, I'd have ramped up much sooner. My advice is, start such a file, see how it goes 3 weeks from now, and then ramp up if you have to. Hang in there. Wishing you better days ahead, and soon. Bye, Vee

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