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Have But Don't Have Lupus ??? a Little Confused

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Hi Everyone,

I'll start from the beginning I guess. I causally mentioned to my family doctor over a year ago that I had a lot of weird twitching and pain in my arms and legs (I put it - "so bad I want to break the bones to make the pain stop"). She ended up asking me more questions and referred me to a neurologist. The neurologist ordered blood and other fluid tests, MRI and EEG (the one where they hook up the wires to your brain - I think that's what it's called). By the time the test dates came around, about 6 months later, the symptoms had almost stopped. I have experienced this for as long as I can remember, I'm 25 now. Anywho....she diagnosed me with Benign fasciculation syndrome (BFS). I asked her to test me for Carpel Tunnel Syndrome in both arms as she was doing the nerve test anyways (as the family doctor attributed the pain in my wrists and elbows to CTS) but she said I don't have it. The neuro then mentioned that I do not have MS or ALS or anything, just BFS - although, my ANA came back positive. She said about 10% of people with this positive test do not have Lupus, but she said, if you develop the symptoms, go back to the family doctor for a referral to a Rheumatologist or if the pain gets so bad again and the Rheumatologist will prescribe meds and possibly physio.

OK...so, I've been reading all about the symptoms and low and behold, I have had many of them all my life. Especially when I was younger. So at what point do I tell my doctor about these symptoms, when the pain gets so bad I can't take it and it takes months to get into to see the Rheumatologist?? Lately, I haven't had pain, but fever and especially fatigue, it gets worse every day. I also have an unexplained rash on my face, not red but itchy and bumpy across the left side and on the ear. I'm also feeling more "dazed" these days, not remembering things etc.

I live in Ontario, and the health system here is so crappy. I could wait 3-4 months just to see my family doctor.

I am also trying to consider insurance as right now I'm pretty sure it's not a "pre-existing condition" as there was no formal diagnosis.

Anyways, your advice and suggestions are greatly appreciated.

Thanks,
Samm
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