Hello,

I'm brand new to being diagnosed with RA, and am trying to get a handle on the whole situation and what to expect. I am a 21 year old female, and have joint or other autoimmune issues for about 3 years now. But my symptoms never stuck around longer than a week or two, and so we (dr and I) decided to just wait and see what happened. Late this past summer things really starting taking off, and I started suffering from red, swollen joints (on both sides of my body) extreme stiffness, lack of sleep due to pain at night, and even loss of mobility.

At the time that it started getting bad, I made an appointment with my internal medicine doctor and she ran about every blood test known to man. I had some decreased white counts, but other than that my RA factor was negative and everything else was within normal boundaries. Initially she prescribed sleep aids thinking that all my symptoms were due to lack of sleep, or even stress induced. The sleep aids didn't do anything for my symptoms and I continually got worse.

Over the course of September and October, I was in her office 4-5 more times, each time tweaking different things from lifestyle and exercise to medications and supplements. By the end of Oct she was pretty baffled as essentially didn't know why I felt the way I did because she couldn't find any reason (essentially it was all in my head--yeah right!). So she put me on a muscle relaxer at night, and suggested I go see a rheumatologist due to my family history because she was thinking that I might be heading down the road of RA.

I live in the same town as a really good university hospital, and was able to get an appointment with a rheumatologist in early December. I went and had my appointment with him, and he spent all of 15 minutes with me. He briefly looked at my family history (my great grandmother and a cousin both have RA, and my mom has presented symptoms for years and has elevated blood markers but thankfully RA hasn't showed its rearing head), as well as looked at my blood tests. He did a physical exam and in the end said that he thought that I had RA.

However, he said since I didn't have a positive blood factor he wouldn't treat me until it got much worse (he said when it got to the point I couldn't function day-to-day he would then start aggressive treatment). The appointment was essentially left the point that he wanted my internal medicine doctor to ramp up my sleep aids and anti-inflammatorys, as well as any pain meds as I needed them. He said that when she (my dr) and I felt that I needed his help, then he would then start actively treating my case.

When I walked out of that appointment I was so disheartened and pretty upset. I felt like if he as a Dr felt like I had RA, why wouldn't he try to treat me? I have done extensive research, and I don't mean to play dr on myself, but I completely agree with his diagnosis. I'm having a hard time understanding why he isn't wanting to be proactive about this. I haven't had another appointment with my internal medicine Dr since the appointment with the rheumatologist (I went back home for the holidays and have been out of town), but I go in to see her in about 10 days. I am of the opinion that I don't want my symptoms just "managed" with sleep aids and pain killers, I want to do something proactive to try to stop this!

It seems from all of the reading on this forum that most people have to meet several doctors before they can find a good match. So how do I find "the doctor"? and how do I prepare for upcoming appointments that are going to be "second opinions"? I'm really afraid that the next specialist I see will have the same reaction that just because I don't have the blood factor, they will not help me. Any advice on how to find a good dr? and also any advice for preparing for that appointment?

Sorry that this post has been so long, its all new to me and I'm having a tendency to go too in-depth when talking about it... In addition to Drs, what should I be hoping for treatment wise? What has been successful for people in the past? What side-effects are normal? In general, what should I be expecting?

And to top it all off, any advice for helping family members understand? Unfortunately I have several members of my immediate family that are of the opinion that if I look, and act fine, then nothing is wrong with me. I have approached this entire situation from the perspective that everything happens for a reason, and that I shouldn't be negative or bitch and moan when I'm having a really bad day. So other than stiffness and red joints, and once in awhile a few mentions of my being in pain, my family doesn't see (or hear) about this disease. It has become extremely frustrating because I feel like I really need their support and need them rallying behind me.

Thank you so much for bearing with me and reading my lengthy post, and I appreciate any insight or advice that you have to offer. Thanks!