What diagnosis?

[Leroa]

Has anyone here ever had or known someone who was misdiagnosed with RA, lupus, fibromyalgia. How can one be sure what's really going on?

[kevg]

You need a series of blood work and that should tell you. I have blood taken every time to see what number I'm at

[shareasmile]

I was first diagnosed with seronegative rheumatoid arthritis in 2013. Then, when I was having a flare in 2015, my doctor did a quick questionnaire and suddenly I had fibromyalgia! I was so angry when I left that appointment, my blood nearly boiled and my blood pressure skyrocketed. I did not have most of the symptoms that go with fibro and I knew he was so wrong. The next time I saw that doctor, (which I had to wait 4 months for) I argued my case. He touched here and pressed there and said, "Ah you don't have fibromyalgia." Well, duh. The problem with autoimmune diseases is that they are so difficult to define exactly. If this or that blood test doesn't show positive, then there is still a big mystery going on.

I think it is fairly easy to detect an autoimmune process, but defining exactly which one is the most difficult part of the mystery and may take years. I am still searching for that answer, but fortunately, the medicine I take has "it" fairly under control.

Back to your question--I have wondered in the past if I truly do have an autoimmune issue. But when I think back to how miserable I felt and read my journal from those days, I am convinced that something is not right. I hope you or whomever you are asking this question for can solve your mystery and find the right care.

[Leroa in reply to shareasmile]

Thanks for your story. It's good to know that uncertainty is normal, albeit the only normal for auto immune disorders

[tselph]

I've wondered that myself. My RA was diagnosed with an MRI. My blood tests were negatives. But after my Dx and being placed on Meds, my symptoms skyrocketed. It started in my big toe of my right foot with painful joint. I'd complained about it to my pain doctor, but he disregarded it as something silly. That's when I asked my gp to refer my to a rheumatologist. She told I didn't have it because the blood tests she ran were negative. But after several X-rays & MRI's my RA Doctor said otherwise. Now my toes on both feet, both hips, my hands & my knee are affected.

I always think that second opinions are worth pursuing if your gut is telling you to. Good luck & do what you feel you should.