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2014 diagnosis and Intro
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gecko50 posted:
About two years ago I developed an excruciating stiff neck and severe headache. Mostly I lay in bed because it was so painful. But, I managed to get to the er...twice in 12 days, and was told the CAT scan was clear except for a herniated disc in the neck ( which I knew). Finally, it cleared up on it's own.

Then came an onslaught of muscle cramps and constrictions so powerful I would just cry until they loosened. Sometimes they wrapped around my knee or hip.

I began running fevers, low grade, with swollen lymphs, and night sweats.

It was just the beginning of joint pain and swelling. And just beginning of seeing a series of doctors. Neuro ( severe carpal tunnel in both wrists) Balance issues, which have caused a number of falls. But no explanation.

One Rhuemy who said I needed a hemotologist because of blood abnormalities ( hemolytic anemia, MGUS) Changed to another received RA diagnosis, but I changed again and found the right doc for me.

He has politely listened and observed and listened to my strange symptoms every three months-FATIGUE foremost- and then when the malar rash appeared he said "Lupus" but is redoing the ANA.

Meanwhile, had to FNA of a thyroid nodule, benign ( hey, I got a break) but blood work showed elevated cortisol..so more tests coming.

I am a retired educator, 64 years old. I consider myself lucky to have a full, active life until now. But it's tough now financially, emotionally, and physically to hurt all of time and feel so limited.

What I don't understand, as I read the posts, is what lupus really is. I understand my immune system is messed up and my body attacks itself. But do you say, " Oh, lupus", or to you go to specialty doctors constantly to help with the damage? And how do you know when it's simply (ha) another organic problem popping up?

And, what causes organ failure? Is it from the Lupus?

I don't think I have really accepted this, though I have the meds (Plaq) waiting to be taken when I get over a bad bronchitis.

Any comments and replies would be greatly appreciated. Thanks.
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