Tuesday, April 12, 2011

Autoimmune Disease? Polychondritis?

Since my vitamin D (D3) had tested in the normal range, I was clueless about what the problem could be. But the symptoms were severe bone pain, mainly in the cartilage of the rib cage and by now on both sides, intense pain in the throat and whole neck, severely inflamed eyes, the tips of the ears were red and inflamed, thoraccic pain, leg pain, wrist inflammation and the beginnings of arthritis in the hands. I was clueless and back at the hospital I got a referral to a rheumatoid doctor.

The rheumatoid doctor asked weird questions about when I had the most energy - was it the morning?, whether I had fingers that turned white (Raynaud's syndrome)? ... They were weird questions, but eight out of ten questions I answered "yes" to. They were the right questions. He examined my arms, swollen wrists, noting the sensitive forearms and ordered blood testing.

Two weeks later I was back in his office. He was happy to inform me that I had no rheumatoid problems, that the bloodwork came back normal. I did not test positive for Rheumatoid Arthritis or SLE (lupus) and my rheumatoid factor was 7 so I was clearly under the 15 "normal" range. Wow! I had only the strict vegetable diet to credit for that (I learned about lifestyle management at Wildwood Lifestyle Center & Hospital in Georgia), but he was completely intollerant of ANY treatment other than NSAIDS or immunosuppressants for ANY rheumatoid problem ... absolutely not ANY! He did say that he had thought I had strong clinical rheumatoid problems ... but with the bloodwork, no, there was no rheumatoid problem. Goodbye.

I was stunned! He knew all the right questions, and the inflammation was horrible, and that was why I still maintained a strict vegetable diet ... just to cope with life, and really, I was barely coping. [While at Wildwood Lifestyle Center I had met a severe rheumatoid patient and at the end of her intensive 2 weeks of therapy, her RF dropped below 15 too, but that didn't mean she climbed out of the wheelchair! She was able to get up and down a bit but walking around just wasn't an option yet. Our doctor even said that the RF test was a marker test and should not be used strictly for diagnosing disease...]

Possibly Polychondritis?

Via a long chain of emails, a nurse friend thought I should look into Polychondritis, a horrendous autoimmune disease that slowly destroys the cartilage in the chest, nose, ears and throat. I had all the symptoms except with the nose cartilage, where usually early signs of the disease are first apparent. I needed answers so went back to the rheumatoid doctor every two weeks for the next month or two. We did NOT like each other. His diagnoses were based solidly on testing, and he was intollerant to anything beyond what tests scores showed. Some of my symptoms, as I tried to tell him, were definitely reactions to food ... dead end there. However, from the tests coming back negative of any detectable problem, I knew that I didn't as yet have a flaming autoimmune disease, and that there was still hope!

Thank goodness polychondritis was not the problem, for two big reasons: (1) it's a horrible degenerative and painful disease, and (2) I would definitely have to find a doctor in Korea who believed that a controlled diet means a controlled disease ... and not one doctor at the hospital I met, except in the endocrine/diabetes clinic, put much thought in diet controlling disease. [Thank goodness that with the coming of spring I was getting more sunshine, which even at the time, I knew made me feel better, and along with the strict diet I was eliminating some of the big symptoms through time and plodding diligence. I was oh so slowly getting better and the doctor and I both agreed not to see each other again!]


Months later when my pinky finger on my left hand started twisting from knuckle inflammation, another doctor recommended I go see that rheumatoid doctor again. No, no, no, no flaming way! I upped my studies and searches on diet and health and a couple months after that I was able to pinpoint candida as the problem ... and with a "diagnosis" finally, I was better able to adjust the vegie diet accordingly which, hurray, is the answer!

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