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Suspect lupus... i'm new here

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Old 02-27-2013, 09:03 PM   #1
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Suspect lupus... i'm new here

Hi Everyone,

My hands hurt badly, the joints feel painful and stiff, my thumbs almost feel like they are broken. I've had symptoms since 2004 which prompted me to get to the Doc, possible MS testing, the MRI showed a brain tumor, ouch, I had brain surgery in 2005. 2006 I was diagnosed with a retinal disease called CSR, which I read possibly may be correlated to Lupus.

Right now it's day 5 of what feels like arthritis, and I started this rash across my checks and on the bridge of my nose, when I'm stressed. I have an appt with a GP on Friday with a laundry list of symptoms. My balance is way off, blurry vision, headaches, tingling and sharp pains in my eye, and hands, fatigue, theres more but my hands hurt too much to type

Any insight on this, and advice you pros can give me will be sooo appreciated. I went from thinking MS, till this rash appeared.... Not sure which is worse....

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Old 03-01-2013, 06:35 AM   #2
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Re: Suspect lupus...i'm new here

Hi & welcome. There are some sticky posts (permanent info posts) above the user threads that are a good place to start. One basically explains how lupus is diagnosed: there are 11 criteria, of which you generally (not always) must meet 4 or more for a diagnosis of systemic lupus (SLE).

ASIDE: There are other forms for which patients meet fewer than 4 criteria, for example, cutaneous lupus and drug-induced lupus.

The "sticky" on APS (antiphospholipid syndrome) describes a blood clotting disorder that can occur in people with lupus, also occasionally "standalone". (I think one possible symptom is severe headaches.)

There's also a "sticky" on skin problems in lupus. Whether the rash over your nose is really a "malar rash", only a professional could say. BTW, if it comes & goes, leaving you with nothing to show, you could take a picture.

I'm only a patient of course, but if I were you, I'd want my GP to refer me to a rheumatologist without delay. I'd think that hand & joint pain, fatigue, etc. for so many years should at least raise suspicion for lupus, rheumatoid arthritis, and other "close cousin" autoimmunes. Lupus can actually be managed pretty well in many patients. The goal is to prevent it from affecting really major organs (kidneys, brain, heart, lungs, etc.)---so everything depends on getting a proper dx & ongoing treatment from a rheumatologist well-versed in lupus.

I hope this gets you started & that you post again soon. Sending warm wishes, Vee

Last edited by VeeJ; 03-01-2013 at 06:38 AM. Reason: typos

Old 03-01-2013, 06:52 AM   #3
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Re: Suspect lupus...i'm new here

Ditto what Vee said, and can you tell us what CSR stands for? I only know about CRS (HA) which most of us lupies have. I would ask Dr to do some baseline bloodwork on your first visit for lupus and RA, then you'll have the basics when you see the rheum. These should include a urinalysis, CBC, chemistry panel, sed rate, CRP, ANA with titer and pattern if +, RA factor, and because of your symptoms of balance problems, Vit B12 and antiphospholipid antibodies. That will get you the basics which the rheum can fine tune with additionals or repeat any abnormals if needed. Good luck. After 10 years, surely something will show up to explain.

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