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Old 02-26-2012, 12:24 AM   #1
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Autoimmune? Would love some input

Hi all. I'm 27 and with a pretty complex medical history already - CRPS/RSD, gastroparesis, autonomic problems secondary to the CRPS. Osteoporosis, vertebral compressions secondary to the osteoporosis, disc bulges. But would be interested to hear if anyone has similar symptoms or experiences, as right now my doctor and I are struggling (getting close to referral time, I think, but I have so many specialists already that it's getting a little silly...) Apologies in advance for the length of my post.

I'm always tired - I'm in severe pain, get 2-3 hours of sleep a night - but probably 4 or 5 months ago I started getting debilitating fatigue. At its worst I can barely function, struggle even to hold a semi-intelligent conversation.

It's hard sometimes for me to recognise new pain, but around the same time the fatigue started, I also developed additional joint pain and started getting fevers.

Almost every evening now, probably an average of 12 days in a fortnight, I have this horrid fatigue and these fevers ( 100-101.3F) that hit around the same time every day. They last maybe 1-4 hours and then my temp goes back to normal.

In December, I had a short course of relatively high dose prednisone for unrelated reasons - and all my symptoms resolved. This led my doctors to suspect 'something' autoimmune, and an occasional butterfly type rash had us wondering about lupus.

I've had two regular panels so far looking for autoimmune issues - both ANA negative. Had a HIGH WCC and ESR on two others, but also had infections going on at the same time... in the last two months, I've had a UTI, meningitis, gastro and cellulitis.

Currently I'm waiting on results of an extended panel - which checks ANA, CRP, ESR, dsDNA, ENA and so on.

I know none of you here are doctors and there's no medical advice - but can anyone relate to these symptoms?

Cheers.

 
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Old 03-01-2012, 12:27 PM   #2
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Re: Autoimmune? Would love some input

Hello. I'm wondering if you got your blood work results back. You said you had a high wcc. Did you mean wbc (white blood cell count)?

Yes, your symptoms are familiar to mine when I first began having auto-immune problems. I had a low grade fever usually in the afternoon and a high WBC. The fatigue was unbelievable. I could believe how horrible I felt and that nothing showed up on bloodwork.

I get roscasea. It kind of looks, like the lupus rash but it doesn't go across the nose. Anyways, my diagnosis is rheumatoid arthritis.

I wish you luck and hope you get some relief soon.

icecreamlady

 
Old 03-01-2012, 05:21 PM   #3
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Re: Autoimmune? Would love some input

Hi icecreamlady and thank you for replying- I'm still waiting on the extended results... I should hopefully get them this afternoon. And yes - WCC = White Cell Count.

 
Old 03-02-2012, 03:04 AM   #4
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Re: Autoimmune? Would love some input

laura,
Try not to be discouraged if your test results come back normal. It takes a while before anything shows up on blood work. My blood work was normal until the swelling started, then everything was out of whack.
Interesting. I had viral meningitis.
iclady

 
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Old 03-02-2012, 03:34 AM   #5
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Re: Autoimmune? Would love some input

Thanks so much. Yes - more normal blood results. I have to see my GP again next week as I had to have a biopsy done on an ulcer/lump on my leg and he has suggested we talk about referral to an infectious diseases doctor. More worried about that at the moment... I don't expect it to be nasty - he's only done the biopsy because it's now 5 months and not healing - but it's 9 hours now since he did it (just a small punch biopsy) and the darn thing won't stop bleeding...

 
Old 03-02-2012, 03:51 AM   #6
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Re: Autoimmune? Would love some input

Wow! Doesn't it always feel like you are "putting out fires"? Does your GP think it's related to your other symptoms?

I meant to ask you, is your joint pain symmetrical?

 
Old 03-04-2012, 01:39 PM   #7
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Re: Autoimmune? Would love some input

Can you describe the bump on your leg?

 
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