Anything is possible…

October 19, 2010 at 10:54 pm


RA and CIDP? I’m not going to say it’s not possible…one thing I’ve learned over the past year and a half is that, especially among auto-immune disorders, anything is possible. They all seem to have their lists of symptoms and typical methods of onset, but there are as many exceptions as there are rules! Seems like every neuro I saw was convinced that CIDP “HAS TO” start in the feet….”never starts in the hands…always starts in the feet…” (read that in your best “RainMan” voice to get full effect…).

I only know enough about RA to be dangerous; the things I “Know” about it are anecdotal from watching my mother suffer with it for 20+ years. Horrible disease. When she married, at age 19, she wore a size 4 wedding ring; after she died and we were going through her things, her original rings looked like baby “toe rings”. She was always so proud of her elegant fingers; then later on they looked like gnarled pieces of jerky. I watched her suffer through having all ten “base knuckles” (the ones that attach the fingers to the hand) replaced with nylon joints, and then one hand done again ten years later. Every “base knuckle” on her feet had to be taken apart, surgically, scraped, sanded, cleaned, and reassembled. As soon as one joint would be repaired or stop hurting, the pain would simply travel to another joint. There are no great drugs for it, either. Lots of “okay” drugs, and a million snake-oil home remedies, which most patients become desperate enough to try at some point. “Raisins soaked in Gin”, “Cod Liver Oil every night”, DMSO while it was still legal, you name it.

My best advice would be to stop worrying about it/thinking about it; find a great rheumatologist via an Arthritis support group in your area, and be tested. By tested I don’t just mean the clinical bloodwork, but physical exams, etc. As I said before, I tested negative on my last RH test two years ago, and my ANA was normal. But, I’ll be tested again in a couple weeks, and also undergo some needle biopsies of these “rheumatoid nodules”. I’m definitely in some sort of flare…I ACHE in all my hand, wrist, elbow, and shoulder joints something horrible. The nodules on my hands are growing by the day. The ones on my elbows are growing, and I’ve developed more on my right arm. So, I kind of “backed my way in” to a diagnosis, I guess. As the neuro’s said, I had to wait for something to give a clear indication, and I guess these were it.

I DO know that having one auto-immune disorder puts you at a higher risk for others, so again, I guess it’s possible. Sounds horrible…those two things in one body. But, both illnesses rely on depressing the immune system for relief, so maybe treatment for one would help the other…who knows?

One of the most powerful lessons I’ve learned, and still work at, through all this is this: Don’t drive yourself nuts “what-if”-ing everything. If you think you have something, get to a doctor and find out. And, at some point, we all have to learn to trust the doctors. I kind of think that’s a combination of finding doctors we trust, and learning to accept what they say and give up some control. I know it was for me.

Good luck…and go see a doctor!