"We're Not Exactly Sure What's Going On..."

[Sangye]

I'm really glad I found this site. You're all so kind and supportive!

So here's my story. I came into Wegener's through the back door-- a completely atypical case. In January 2005 I fell hard on the ice, a real jolt to my spine. Two weeks later, I developed the first symptom : a persistent tendinitis in my Achilles tendon. Not so painful, but enough to keep me from hiking many miles a day along the beautiful mountain trails where I lived. This went on for 6 months.

One morning in June 2005, I awoke to find one thumb joint slightly swollen but unbelievably painful, like it had been crushed. I'm a chiropractor, so this got my attention. After a few days, it occurred in a 2nd joint on the same hand. Really quite scared by this point! X-rays were fine. After about a week, it went away, leaving the joints 100% like new.

Within a couple weeks, it happened again. I got bloodwork, expecting to see inflammation and probably RA, but it was all clear. This repeated for several months. After 4 months, it began in more and more joints, totally migratory. It wasn't just achy, it would take out the whole joint. I've had fractures with nothing near the pain. By January 2006, I was nearly crippled with pain as it settled in almost every joint.

At this point, I should explain that as a wholistic doctor, you couldn't get me to take drugs unless it was life or death. (Now there's some irony for ya!) I tested mildly positive for Lyme's disease, and my dog had just died of Lyme's right before I got sick. Curiously, we had almost identical symptoms. My wholistic docs treated me for Lyme's using natural remedies, with mixed results. Mostly I continued to go downhill, but since my bloodwork was still perfect, we had no idea which type of medical doc I should go to.

In April 2006, I got a minor cough. It persisted, and I was still going downhill. I caved and took antibiotics-- no change. Now my bloodwork began to show anemia, and I was getting pretty white. Over the next 3 months, I got whiter and weaker and could barely move from pain and difficulty breathing. My hemoglobin fell to about 50% of normal. I finally did a chest CT, and the radiologist said whatever it was, it was really bad! I got in to a pulmonologist the next day, who agreed, and ran a bunch of tests, including an ANCA. One week later, I showed up for my appointment gasping for breath. He closed his office and drove me to the ER, waving the just-in test results behind him. He gave me the 3-minute capsulized version of Wegener's in the car, and came to see me many times each day to reiterate the necessity of doing the treatment. Months later, a nurse told me he'd lost a patient to Wegener's just a few months before me, and was absolutely terrified I wouldn't do the treatment.

I got loaded up with 1000 mg prednisone, a couple pints of blood and put in the ICU for the first couple days. The 3rd day in the hospital, I went to stand up and had sudden, severe cramping in both calves. "Blood clots," I announced. The ultrasound was negative for clots, but the pain persisted for 3 weeks after I got home. It was crippling pain. I thought I would pass out. I was so weakened by the anemia, steroids, cyclo, etc... my acupuncturist said I had "no chi reserves left." Then one morning I insisted on going to the pulmonologist right away. It was like an alarm went off in my body. It turned out I was filled with blood clots throughout both legs and both lungs. Everywhere, uncountable. Back in the hospital to begin blood thinners. And my lungs were still hemorrhaging. Wanna see an ICU doctor turn pale?

About a month later, more clots! So I had to go off coumadin and stay on the daily blood thinner injections into the stomach. A VERY painful shot! (I'm still on them, but might be able to stop in December.) Lots of ER visits followed. Then 2 rounds of severe pneumonia, chronic leg ulcers and another Weird Whammy-- pseudotumor cerebri (elevated intracranial pressure). This was terrifying. If the pressure inside your head goes up, there's no way for the skull to expand, so it pushes your eyes out. Beginning with the optic nerves. Vision turns into a funhouse mirror. Then your body tries to eject the head by barfing it off with projectile barfing. Ahem. My friends said it was like witnessing an exorcism.

Shortly after that, I began treatment at Mayo Clinic, Arizona. I had stopped pred, cyclo, everything, because of the pneumonia. I started Cellcept, which is much milder than chemo--doesn't do the collateral damage. By last December, I got off 24-7 oxygen, after 19 months. This year has seen fewer crises--kidney stones, infection, a huge leg ulcer. But I still haven't worked in 2-1/2 years since I went in the hospital, and I still can't walk a grocery store.

I just moved to Maryland, and started at Johns Hopkins Vasculitis Center. They're incredible, and I'll share some pearls from them on another post. They know way more than the guys at Mayo, less fear. It's a little ray of hope. Nothing has improved for so long, that I've been losing hope. I've never met or read anything from someone else with Wegs until this site. Really opens one's eyes. I'm so happy for those of you who've had either a milder form or milder reactions to the drugs. And I'm so heartbroken for those of you who've had it much worse than me. Thanks for listening, 'cause I know you guys get it.