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Thread: Hello from Colorado

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  1. #1
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    Default Hello from Colorado

    Hello everyone. Just looking for some support and guidance as I'm freaking out a little. I don't know anyone that has lupus. I actually have not yet been diagnosed, my first rhumatologist appt is on Friday and I feel like it will never come. I am so nervous and afraid to be diagnosed. I was pretty convinced I had RA. A few months ago I started having severe joint pain, muscle pain, fatigue, rashes,numbness and tingling, frequent urination. So I finally went to the family dr. She said either lupus or RA and decided to do blood tests. Didn't even look me over or do a UA. I got a call the next week from the nurse said all my results were negative and I have depression. I was very angry because I have had depression before and did not feel at all depressed. The next day nurse called to say more results came in and my I'm not sure what its called inflammation in my body came back a little high, on the day of the blood draw I wasn't having severe pain just a little. She said she didn't know why because I was neg for lupus and RA and that I could come back in for more tests. I told her I wanted a referal. At this point my pain was getting severe so I called the specialist and they scheduled me 2 weeks out. Now my pain is mild except the stiffness. But last night I started doing research on RA and Lupus and realized the problem with my face for the last 2 months has not been dryness or allergies but a butterfly rash. And for the last two months I have been getting mouth ulcers. So I'm fairly sure its not RA but now I'm freaked out. Are there other causes of these symtoms, friday is so far away. Now I'm worried about kidney biopsys and ect. I should have never looked it up, one site said 80% of people live 10 years. Sorry I'm ranting, just scared.

  2. #2
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    Who knows what you have??? Let's hope it's not Lupus,but if it is there are ways to live with it. Stressing is not good for you,especially if you have Lupus.Just take it one day at a time. Don't get caught up in the what ifs...too much of that can cause subliminal symptoms Good luck, hope you get some answers soon.

  3. #3
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    So after a very expensive dr's appt, I am still undiagnosed. I went to the specialist and he was nice, but not as thorough as I would have liked. He didn't want to run any blood tests and decided to xray only my hands. (he is an RA specialist) So the xrays came back great so I don't have RA. Because of the skin and nail changes and slight fever he said he thought I have fibromyalgia but there were 2 diseases that could be possible that he didn't want to name yet. He gave me steroids and told me if they worked or didn't work it would give him his answer. So he called last week and I told him the steroids were AMAZING, I felt normal again. So he said I needed an MRI within a week on a joint that has pain. So I went in for my MRI today and they did my wrist. The tech said he didn't see anything damaging but lots of fluid which means inflamation, so now I am waiting for the dr to call me with the results. I already knew I had inflamation so I'm not really sure what seeing it on an MRI will determine.

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