New here and totally frustrated

My saga began in late 2012. My hands and wrists started killing me and I had nodules on most of my fingers. I've had multiple foot surgeries due to tendons degenerating. Was at my foot ortho and asked about my wrists. He looked and said "how long have you had these nodules? I'm running bloodwork on you". They call a few days later and said SED was elevated at 16. Normal 0-15. CRP elevated at 6.7. Normal .2-5.0. ANA normal. Rh factor normal. Put me on steroids and referred me to rheumy.

Rheumy walks in and says Sed and CRP is normal by "his standards" but found my wrists, elbows, knees, and ankles warm and swollen. Put me on another round of steroids and ran a slew of bloodwork and X-ray of the hands. Bloodwork came back normal and he was surprised. X-ray showed osteo of hands. I forgot to mention I was having debilitating fatigue. Follow up in a month and repeated labs with same results. After 3rd visit with clinical signs present and fatigue unrelenting he started me on Plaquenil. Did well and it reduced symptoms about 25-30%. That spring, four months in, I started with photo sensitive rashes. He had Dermo walk over and he said it wasn't a mediciation reaction.
Did biopsy and it was indeterminate. Of course! Blood work revealed positive ANA at 1:160 Homogenous. All else normal.

Rocked along still having some rashes but a little better as the Plaquenil built up in my system. Continued with fatigue and periodic bilateral joint pain. Was put on Limbrel. Repeat ANA was now at 1:320

He continued testing for everything under the sun. Continued to say he couldn't believe CRP WASNT elevated. Stopped ANA because it was obviously a "true positive"

After continuing to present with clinical symptoms I was put on Methotrexate in May. Rashes totally went away and fatigue improved Had thyroid show as low so was put on Synthroid. So now I'm at about 75% of normal. I had a flare a couple of weeks ago that lasted about five days. I asked rheumy to run bloodwork again. He did and all normal except elevated EOS for six months now.

So....my rheumy has treated me based on clinical presentation THANK GOD. My meds have brought me back to almost normal. So what's my frustration? It drives me CRAZY not to have a diagnosis! Doc says it doesn't matter because he would change nothing of his protocol. Said Meth treats both RA and Lupus but will not say which, if either, he thinks I have.

This is why it bothers me:
I don't know how to respond to dr visit questionnaires re: current health issues.
I don't know how to respond to "why are you on these meds"
I don't know what to say to people when I can't put one foot in front of the other and have to bow out of commitments

I feel so stupid answering "what's wrong?" With "I DONT KNOW".
I just need to learn to deal with it!! any suggestions? Please?

Emmie,

I don't have a diagnosis either and it drives me absolutely crazy! It is narrowed down to one or more of RA, Lupus, Scleroderma and/or Ankylosing Spondylitis. At other doctor's offices I usually say "undiagnosed autoimmune disease". In my actual paperwork at the rheumy's office the diagnosis is arthralgia (joint pain) and myalgia (muscle pain). Which to me makes it sound like I'm a hypochondriac. Grrrr.....

Hoping you get a diagnosis soon!
Jen