[QUOTE=AuntieLeela;3738778]JA is pretty rare, regular docs, even regular rheumies, don't know what to do with it. There's a saying in medicine "if you hear hoof beats, think horses - not zebras" this is fine and true and a good way to remind young doctors not to jump to conclusions.
The problem starts when they take that maxim to an extreme and refuse to believe in zebras (rare diseases) altogether. Zebras like you and me get bounced around awhile before somebody realizes that the "striped horse" in front of them isn't a horse at all.;)
I'm on Orencia + methotrexate right now but I've been on tons of other meds too. My anti inflammatory is Clinoril.
Let me know how the appt goes! Good luck . . .
Well what suprised me is that I didn't have systemic which is the most rare form of JRA.
First off I was so impressed with this doctor. She examined me for a very long time, longer than any doctor I had been too. She was shocked at the amount of swelling in my fingers, wrists, knees, ankles, and toes. This was the first rhematologist who said that my RA factor does help confirm the diagnosis but it's not the end all be all.
She is almost sure that I have polyarticular JRA. I was actually suprised because I thought I may have systemic JRA. She wanted me to take a blood test, (which I did ASAP after I left her office) She is cchecking my RA factor again, doing a lupus panel, and wants to make sure I'm healthy enough to start on Methotrexate!
I'm so excited to try this because naproxen isn't cutting the pain enough, or stopping the diease. She thinks I will respond well to medication and she was suprised that it took so long for someone to diagnose me. She explain how my mucles are contracting around the joints and why they were soooo sore in the beginning. She was intrested in the rash but we will have another appointment on October 15th to go more in depth.
She will calling us on friday when the tests come back and hopefully start treatment.
When I left her office I just cried. I was sooo happy that a doctor didn't think I was CRAZY!!!!!
I have a famly friend in her early 70's and has suffered from RA for 20 years and her hands are disfigured, but recently a doctor finally put her on humira and it works wonders for her. She is able to move her hands! She was talking to my parents and she said, I can't even tell you how much pain she has been in these past two years. I broke down!!! I had always understood her pain and she understood mine and it just felt like such a relief that I wasn't insane or I was a cry baby, or I complained too much.
My mother was so happy because she knows this will work, we have so much hope for the future. My dad seems a little sad about the diagnosis of JRA.
I had so much anger inside of me when people kept telling me I wasn't really sick which St. Judes told me. They said my brain was firing off pain and I was the one who could stop it. The same rhematologists who treated me so horribly before said to me (I will never forget this) "It's fibromyalgia, and yes your're in pain but we are all in pain. Like my shoulder hurts today." she turned to her nurse and her nurse said "Oh yea we all have pain." Well doctor I think you were wrong.
I'm not angry at myself anymore most of my anger just vanished. The only anger I have is for the rhemtologists who turned me away because my Ra factor, and didn't examine me more than a minute. The last rhemtologist I went to, my hands were like claws and hurt so bad and she said they didn't look arthritic. I wish ONE doctor took the time to examine me in the beginning and try just a little bit harder just a little bit so I wouldn't have to suffer like this.
To not be able to attend school full time has put such a ruined so many friendships. I'm not like any of the teenagers at my school. I want to to be able to do what i used to love. Rockclimbing. Hopefully some day I can go out and not be afraid of the pian. I'm striving to be 100% better but I wll stettle for any pain relief. I know that it's a long process, and side effects are going to be nasty, but I just want SOME pain relief.
Oh in the summer I walked 3miles a day but now I walk 1.5 during the week because of school and 3 on the weekends so I have cut back recently.
I feel so valiadated, I'm just so overwhelmed. Call me crazy but I have so much hope and I'm so optimistic about things now.
I always recorded on my DVR mystery diagnosis, diagnosis X, and I always thought when will my mystery be solved and yesterday it was.