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I am Jennifer and I may have lupus. I am still in the diagnostic stage. A year ago I went to the Dr with stomach side pains to learn I had an enlarged spleen and liver with no discernible cause, but possibility for liver enlargement non-alcoholic fatty liver. I began working to lose weight, which alleviated the pain. Over the last year I lost nearly 60 lbs (down from 350lb) through better eating habits. But along the way, I noticed something. I was hurting more, becoming more forgetful, severe dry eyes affecting my vision. Then I found I had these two areas on my arm...large bumps, wouldn't heal after months and some days so itchy, I wanted to gnaw off my wrist!! Google images pointed to basal cell carcinoma. Went to have it checked and that was where I first heard the word Lupus as a likely cause. Ever heard if a "rare giant cell"? ANA panel was fine. C-reactive protein is somewhat elevated, d-dimer is too, vitaminD deficient, but most everything else is normal. Appt with the rheumatologist in abt a month. So for a couple of months, i notice my pain is worse. Especially if i have refined sugars!! I am only 43 and i walk like Mr. Magoo. Last night i went to home wedding and ate too many carbs and had a glass of sangria. Within 3 hours, i was in severe pain from my shoulders to my toes. Every joint and muscle hurt. I was in so much pain, i started with 4 ibuprofen and then had to add hydrocodone on top of that because it was so painful to lay in the bed...even though it is a memory foam bed. If this turns out to not be lupus, then i have no idea what else it could be. I am at a loss. It is becoming so depressing and i have fears that i am continuing to get worse. You should feel better when you lose 60 lbs, but I feel like I am 99yrs old. I have to bow out of anything that is not a must do. I have to lay down so often which is hard when you work fulltime and have 2 small children.
Thank you for letting me introduce myself..i need support in understanding what is happening to me.
 

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Hi Jennifer,

Congratulations on the weight loss. It can't have been easy to change your eating habits and stick with it. I would love to have your will power.

The only giant cell I have heard of was giant cell arteritis in relation to Polymyalgia Rheumatica. It is another autoimmune disease having to do with inflammation of the arteries. Your raised C4 could correspond with such a finding. The rheumatologist should be able to sort out if it is due to that or something else.

Take care,
Lazylegs
 

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Hi Jennifer,
I'm a newbie here too but I wanted to let you know what my new doctor said. Backing up a bit, I got my first low grade long term fever (12 months of fever) at age 29 (28? can't remember) and also diagnosed with pleurisy. I'm soon to be 63. For the past ten years I've gone to doctors all over NAFTA (US, Canada, Mexico). (I live in Mexico with my husband.) I've spent thousands of dollars. I have hurt all over for years. Slept like crap. Had a red face that hurt so much it felt like I'd been slapped a thousand times. Enlarged spleen and fatty liver disease (and I'm skinny, go figure), high fevers, more long term low fevers, hair loss, huge weight loss, Raynaud's, Sjogren's---positive diagnosis for those, anemic, wacky blood tests that would lead you to think I might have leukemia, alopecia in one eyebrow, scalp that hurts too much to brush my hair, etc etc. But because my ANA, even to this day, has always been negative, rheumatologists just throw up their hands and shoo me away. Except this new doctor. Lo and behold, there IS such a thing as seronegative Lupus. And he said this is what I've got, ANA negative Lupus along with other stuff, what he called "overlap connective tissue autoimmune" stuff, a grab bag of everything. It's worth googling---seronegative Lupus---there's information out there. Apparently it's been known about since at least the early 2000s but most doctors are slow to accept it and/or they're stubborn and refuse to believe it. Good luck and keep fighting for yourself. We're the only ones, in the end, who truly care about our well-being, so when others start to whisper things like "it's all in her head" or "I think she's a hypochondriac"----ignore them and keep fighting to get a diagnosis. It sounds like you need a thorough work-up with labs, etc. Good luck and keep up the fight! ~ Felicity
 
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