I posted here back in Nov/Dec but have been waiting for an appt with rheumy since then. Finally scheduled for next Tuesday!!! Anyway, as a brief synopsis, I've had fatigue and gastro problems for about 7 years. In the past 3 years I've had episodes (lasting a few weeks to several months) of extreme fatigue, muscle weakness, joint pain (several joints), back pain, nausea, headaches, blurred vision, bruising, bone pain, hair loss, dark circles around eyes, mouth and nose sores, rashes, felt like I'd been beaten all over with a baseball bat, blushed appearance to face, etc. My symptoms searches keep leading me back to the possibility of lupus. My family doctor has done many tests and all are normal except slightly elevated sed rate (twice, months apart.)
Right now I actually feel o.k. In November when I tried to get an appt, I felt like crap. But couldn't get in till now. I have vague bone pain and feel tired right now, but that's all. Should I still go? Or will he dismiss me as lab work may not show anything with me feeling o.k., huh? What would you do? Anything else in preparation? Thanks in advance.
Lupus is such a difficult disease. KEEP THE APPOINTMENT!! I would do that so that you can go over ALL of your symptoms from over the years. Often Lupus is very hard to diagnose, and past medical history is key to getting diagnosed properly. He won't dismiss you if you tell him your whole story. You may be going into periods of "remission" and that could be why you feel better and then feel worse again. Eventually what can happen is you just don't come out of a flare, and you get more and more ill with each flare. The blood work doesn't really matter at this point. Lots of us "Lupies" don't have the positiev blood work all the time. It comes and goes as it pleases!! Sometimes when we feel better the blood work is positive, that's just how Lupus works. I would take a good look at your body, your history and make a list of your symptoms (both past and present) for the Rheumy to look at. If this Rheumy is good, he/she will look at the WHOLE picture instead of just what is happening right now. Please don't cancel the appointment because you feel better- if you do and you feel yucky again soon you will kick yourself. At the very least I hope this Rheumy does some blood work and keeps a tab on you to make sure that everything is okay. You sound very much like I do, with your symptoms and elevated ESRs but no pos Lupus tests. I found out that 10 years ago I did have the positive blood work but everyone "hid" it from me. I would get your old charts and have a look through to make sure that blood work was not missed. And while looking at your blood work, there are several markers for Lupus (it is a big myth that just the ANA, Anti-DNA, ENA etc are the only Lupus tests). I would look for: anything slightly high or even slightly low. Sometimes in your CBC some things will just be a bit "off" like a low lymphocyte count. that is key in diagnosing Lupus because a lower lymph count goes with it lots. Also, anemia is a big one! And stuff in the urine can show up too. Please get those charts if you can, and if you would like you can post them here and I can tell you what anything a bit out of range can mean. I hope that you have a good appt and you will be on our minds!!