Rheumatoid Arthritis Community

I've had an aggressive case of RA for about 3.5 years now. It took 9 months of seeing multiple & different specialist before I was diagnosed. I had no positive blood test results for RA, but the RA meds help me and it is clearly RA now that the symptoms have spread to all of my joints. Focus on getting the correct diagnosis and don't feel bad about seeking a second or more opinions if you don't feel good about the help you are receiving. Make sure you see the correct specialists, preferably someone who sees a lot of patients with RA. Make sure you get copies of all your test results and bring them with you when you see the next specialist. I actually obtained my first diagnosis of Hashimoto's Thyroiditis (autoimmune hypothyroid - there is a definitive blood test for this) from a Endocrinologist before I was diagnosed with RA by a Rhuematologist.

You can't afford NOT to go to the doctor. If your disease progresses untreated, you could have irreversible damage and complications. Immediate treatment is key.
New studies have shown that people can have RA for 10 years b4 having a positive RA factor. My sed rate was normal for years but has been high to barely controlled for 2 years. My RA Factor is negative. But my joints tell a different story. I have an inflammatory arthritis. It's a waiting game for me. I have started treatment with Methotrexate (MTX) with fairly good results.
Having an autoimmune disease is a stress, a burden, & confusing, but it's not a death sentence. Like you, I want a diagnosis NOW. I have 1 known disease & Undifferentiated Connective Tissue Disease-symptoms of several of them. Not all diseases present clearly as 1 disease or another. All of these diseases have some overlapping symptoms making it harder to diagnose them and sometimes there is no clear answer. Find a doctor who is knowlegeable, explains things well, and LISTENS to you. Ask him the questions that you asked above. Be patient. It is important to be calm & try to relax. Nothing will happen quickly. There is no such thing as a cookie cutter RA or autoimmune disease. No 2 patients are alike, although we have commonalities. I would suggest finding an RA support group. It's important not to focus on differences(but make a mental note of them) but to look for similarities and to lend each other support. But if you find that you have little in common with their experience of joint pain, perhaps try the Lupus (SLE) group. This doesn't mean that you have Lupus-just that they have such overlapping symptoms that you may hear more similarities & may feel more supported. Every group is very different depending on the other members, how long they've had the disease, their knowledge, their response to treatement. Be careful in support groups to not allow yourself to feel responsible for anyone else; you need to focus on you, your coping, & on controlling your disease. Get pamphlets from your doctor on your disease. Educate your family. If possible take them to a support meeting if you can. Talk with them. Let them know how your disease affects you. These diseases are hard to understand. You may need to give them some time to adjust.
Lastly, REST every day. Keep moving. Try to stay positive. If you feel depressed let your doctor know and know that you aren't alone in any of this. There might even be an online support group. I don't know-I've never looked. Good luck and get better.

Zingabear, your post makes so much sense to me. I am also one of those that doesn't fall into the clear cut diagnosis, yet...My blood tests are negative but obviously having over 15 joints in pain in the same day is not normal!

Like many of you, I am also worried about being advised to start anti-rheumatic drugs, but things got so bad recently that I am convinced I need more help than NSAIDs. These auto-immune diseases cause us to listen to our bodies. I am learning that this is a process and there are no concrete answers, but rather better or worse symptoms.

Thanks for taking the time to offer your views on things. I do think support groups might help me, as family members can only understand from their perspective.