I have an appointment with a rheumatologist in about a week, and even though I've been through this before, I really don't know how to prepare. I don't currently have a diagnosis of RA, or anything, but all signs are pointing to something autoimmune going on with me.
For years I've had these inflammation flare-ups that no one has been able to diagnose. I've had elevated sed rates, pain and inflammation in my chest (pleurisy - about 9 years ago), fatigue, muscle and joint pain, that would often be worse after exposure to the sun. about 4 years ago I saw a ton of specialists for no one to have any answers. I had myoclonic jerking during these flare ups, which a neurologist didn't think was due to seizures, but rather a response to pain. ANA and other antibody tests were negative, except for a slightly elevated rheumatoid factor. But the rheumatologist basically told me the levels in people with RA are much more elevated than mine, prescribed me with sleeping pills, said I had fibromyalgia, and basically wanted no more to do with me. My regular doc prescribed me Mobic, which did help the inflammation over time, but I was so sick with doctors I didn't follow up and hadn't seen a doctor in 3 years. I would get periodic flare ups of fatigue, muscle and joint pain, and would just take a ton of Aleve for a few days, rest, and it would pass until the next minor flare.
However 3 weeks ago I had a very bad flare up. I was a little tired for a few days, but didn't think anything of it. Then one day at work out of the blue I suddenly got this nausea, dizziness, pain, and the myoclonic jerking started, so I assumed it was just a flare-up, although I'd never have one come on that suddenly. After about 6 hours of intense pain all over my body and in my joints, I had what appeared to be a seizure. More bloodwork the next day indicated a sed rate of 51 (normal is under 20) a rheumatoid factor of 25 (normal is under 13) and anemic again but ANA still negative. At the time the most pressing symptoms were these apparent seizures, which I've never had before, and I was having anywhere between 1 - 3 episodes a day. When I finally saw a neurologist (after over 20 apparent seizures), who was not the neurologist I'd seen a few years ago, the current neurologist spent about 5 minutes with me, told me she didn't think I was having seizures, and said she had no idea what they are. I asked if she thought it had anything to do with the inflammation, she said no - but...why did these episodes not start until I had another inflammation flare-up? And even though she doesn't think they are seizures, I still am not allowed to drive. Waiting to get results from an MRI and EEG, but I'm not expecting much because over the past few days I haven't had any full episodes - some muscle jerking, that's it. What I have noticed is that while I am still in pain, the past week I've had more focused pain in my joints, mainly across my knuckles, wrists, and ankles, while before I was having that pain in addition to more widespread pain all over. For the past several days I have even noticed some significant swelling and redness, primarily across my left knuckles, fingers and hands, that usually starts a few hours after I wake up and generally persists for most of the day, especially on days I've been outside. My fatigue has also been worse.
The point is that I hate doctors, especially specialists, and I am not looking forward to my appointment with the rheumatologist in a week and a half, but I've got to figure out how to prepare for it. With my seizure-like episodes, I kept detailed records of how I felt before and after each episode, and she really could have cared less, so I'm already going into this appointment with a bad mindset. I would like to write stuff down, but what? What's the point if no one really takes the time with you anyhow? I am TRYING to think positive because the rheumatologist is a new one, who took over from the last one, so I realize my experience may be different. But it's hard not to feel negative, hard to not feel like you're just going to get blown off. And the problem with having an illness that comes and goes is that if this flare-up has passed by the time I see the rheumy, there will be no physical signs and it will be even more likely that I will be blown off. So I haven't taken any Aleve in over a week and I'm going out in the sun periodically, just so I can keep this flare-up going, how pathetic is that? 
I guess I'm just looking for some advice of how to approach this appointment, if I should be writing something down beforehand, questions I need to ask, etc. The rheumatologist is really my only hope now. I really don't even care if I get a diagnosis of RA or lupus or whatever - I just want to be taken seriously and finally get treated for something because I have never been this sick for so long in my life. Thanks for reading.