New here and totally frustrated

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New Member

Date Joined Dec 2014
Total Posts : 1
   Posted 12/5/2014 12:21 PM (GMT -6)   
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. 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?

Forum Moderator

Date Joined May 2005
Total Posts : 7675
   Posted 12/5/2014 2:25 PM (GMT -6)   
"Lupus" would be my answer - I could truthfully answer any of 5-6 diagnoses that have shown up on my chart from time to time, but for simplicity sake, and consistency as well, that's the one I've pulled out of the bag and used for over 10 years.

You could also say "I'm being treated for Lupus and RA". Or you could say "overlapping auto-immune disorders", that would cover it all. I'm having a Lupus's not like most of these places/people/situations know much about these diseases anyway.

I don't know where you are located, but if it's in the US, there has to be a diagnosis, or suspected diagnosis, that shows up in the medical paperwork. Maybe you could ask for a copy of your medical records and see what's written in there.

Just take a big breath and let yourself be a bit ambiguous and mysterious!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

RA Info Sponge
Regular Member

Date Joined Oct 2010
Total Posts : 29
   Posted 12/5/2014 3:09 PM (GMT -6)   

I don't have a diagnosis either and it drives me absolutely crazy! smhair 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!

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 12/5/2014 3:36 PM (GMT -6)   
The only thing about a diagnosis is the paperwork for you. As long as he's treating you right I wouldn't worry.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))
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