Arthritis Information -Waiting to be Diagnosed

How about a section for those of us still waiting with symptoms for a definite dx and to begin meds?

Can anyone help me? First Hello-

I have been sick since prior to thanksgving- always very active up until that time-

Here is the long story- short.

I thought I had the flu- several times in a month-hmmm sort of weird- just a fever and weakness. But it was enough to put me down for the count- extremely weak-

All of a sudden extreme pain in my hands- so awful I cant explain-

My hands were just so painful-

I went to MD- sent me to Rheumatologists- who said" hmm I'm not ready to say it is RA" my tests were all negative-a little bit of an elevation in my sed rate-

Xrays negative.

My liver was a little messed up (And I do not drink) so I was told this could happen from RA but also I was positive for some virus "cytomeglo virus" very common.

SO the rheum docotor sends me to an infectious disease doc who had no idea why i was sent to see her- she said to put my hands in warm wax.

I can barely use my hands- the pain never leaves- worse in the AM or after sleeping- I cant open my own car door or lift my grandson-

I cant grasp simple objects or open my own mouth wash bottle-

I go through periods of tired to sort of really tired-

I think I'm going crazy- and nobody is doing a thing to help me-

I know that I have RA- I just know it-

My Mom has it- so I have seen this before-

But I feel nuts NOW-

Any thoughts would make me feel well less nuts!

kind regards-

-margaret in ST paul mn

margaret.goldstein@barbrigroup.com

Margaret, I'm sorry you are feeling so lousy. I think the scary part is not knowing what for sure is going on and especially not having the support of a good rheumatologist. No diagnoses yet for me either but my rheumy is treating symptoms and my pain is much better. You are not nuts! Hope you can find a doctor who will listen and support you in this. Take care, Debbie I feel for you. I am suprised that your doctor hasn't made the diagnosis based on your mother.

I too am newly diagnosed. It has been a frustrating experience. I am an active duty spouse and last year when my symptoms appeared I saw a Rheummy in RI. He said if the symptoms keep up it is probably RA, but would not diagnose me at that time. Then I moved to AL. All during the drive all I remember was how much it hurt to hold the steering wheel and how fatigued I was. I liken it to being unplugged. I could have slept for days. Anyway, I saw a new Rheummy here that dismissed everything and said Fibro. I flipped out and got a second opinion to hear, Seronegative RA. Well, this doc was a droid and I needed someone who had communication skills so I could understand what was happening to me. I saw another Rheummy and she said RA at the first visit, only to say Spondyloarapathies at second visit. The good news was she was aggressive in treatment and pushed me to get on Humira. The other doc woul dhave had me fail 3-4 drugs before starting a TNF blocker. Well, she closed her office 2 months after I saw her. I went to the University of Alabama, Birmingham, where there are the "top docs" in the field. This doctor dismissed my history altogether because I am no longer symptomatic. My drugs are WORKING!!! Of course there aren't symptoms. Anyway, this doc sent me home and said Fibro. She would not fill my Humira.

This is a bumpy and long road. One of my docs that I trust said this field is a gray area. I am a gray patient. My advice to you is to push, push, and keep pushing and seeing various docs until you are satisfied with the outcome. No one else will push for you.

Good luck and God bless.