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!]

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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!

Bone Pain and Rib #10

By the end of 2009 I had seen a series of chiropractors for intense rib and thoraccic pain. In December these doctors had started commenting on my odd rib movement, because more and more ribs were moving. So in February 2010 when I was forced to wear a rib belt (and then later, two belts) to prevent rib movement of right rib #10, I went back to the hospital (I had boycotted going since finding out about the steroid) for x-rays of the lower cartilage that I said was breaking. [In fact, tearing. Bones break and cartilage tear, and rib #10 was in fact moving a lot and as a result causing myofascial pain in the right lingual area, the pain of which I was still attributing to the steriod and subsequent inflamed lymph nodes of months before.] Of course cartilage hardly shows up on x-ray so of course nothing to make a diagnosis on could be seen - waste of time, waste of money, what were the doctors thinking? I demanded a CT scan of the rib cage, and then had to go in again for re-taking it (and get loads of extra radiation) because the technicians didn't scan the lower cartilage area, the affected area - what were the technicians thinking? The technical report of the scan was "tortuous change to rib #10" but not one of several bone specialists I then went to acknowledged that this was a problem! WHAT WERE THE DOCTORS DOING? NOTHING!

This is my March 12, 2010 copy of my chest CT. By the time I had this CT scan, my rib cartilage was hurting badly in a number of areas. The areas I had complained about for the longest was right rib #4 where it meets the sternum but by this time my chiropracter acknowledged that three of the right ribs and two of the left off the sternum were slightly dislocated (soon afterwards, another left rib off the sternum also slightly popped up). Also, rib cartilage felt crunchy under the right breast so much that I stopped twisting in any way, and when the right rib #10 got so bad that I had to even stop wearing the two rib belts (damn, it was bad) I didn't dare move even a millimeter to the left or the right. Rib pain was on the left too, but that pain was manageable. Because the body has more lymph fluid than blood and both fluids need to be circulated so a person can recover more easily, I did make myself walk outside in the cold every day that I had energy. Exercise is important and walking without swinging the arms in the cold, cold weather seemed to ease some of the pain. [In hindsight, I realize this was what was boosting my vitamin D. Getting the regular doses on my face for 2 or so hours a day is probably what slowly eased the pain and was probably the best thing I could do for myself.]

I've finally decided to go ahead and post my personal information. Maybe someone, a medical student perhaps, will benefit from this. Anyway, note the pieces of something that very much look like cartilage fragments falling under the right rib cage. That was where I hurt, hurt, hurt, and when the doctor (the one who prescribed Xanax for me and told me to see a psychiatrist) didn't address this and it's in the area of my complaint, I asked him what that was. He said, "Artifacts." I asked, "Artifacts from what?" He looked at me like I was stupid and never said anything. He did read the analyst's comment to the CT scan, "Tortuous change to rib #10." That was all. Neither he nor any subsequent doctor ever addressed this as a problem!



I was starting to get more and more aggressive about finding my problem, so early in March 2010 I had already gone to a private clinic and had ordered a hair analysis, a complete nutritional analysis as well as blood work on 6 vitamins: B1, B6, B12, A, D, and E. [This was the first step in me becoming my own doctor.]