Interesting all of it?

March 6, 2011 at 9:18 pm

Especially since STANDARDS for diagnosis aren’t yet consistent? Now, they are declaring ‘remission’ standards? It’s not computing in any reasonble sense IMHO.
When I did research at my onset and subsequent diagnosis. I did extensive research as to what was available as treatment/therapy and what the long and short term implications could be. Steroids were out due to other medical issues and Plasmapheresis was, to me a heap more invasive than trying the IVIG, and The IG worked! I am grateful for that, and that I can get it on a regular basis.
That said? Remission…that is like ‘cancer’ isn’t it? Unlike cancer, which has a slew of tests that confirm or deny the existence of it, CIDP is more of a mystery in that ONE’s OWN Body has reprogrammed itself for unknown reasons to attack your own nerves! Some part of our systems have become essentially mutant. Still? No researcher knows why this happens per se, only how it does attack.
A cancer you can cut out or kill via chemo. A mutation[of sorts] is a ‘bit’ harder to deal with? So far, the steroids, Plasmapherisis and IVIG are our lifelines…and soon hopefully the ‘self-stem cell transplants’ for the future.
I’m not condoning any one way over another. I am grateful that I have been successful having IVIG and that it has worked. But…I realized that unless research did a time-speed-warp jump and soon? I’d likely be on IVIG as long as the insurance and my life savings could sustain it.
Then, and don’t get me into THIS? Are the definitions of ‘remission’ and how they vary!
Me? As long as I can and do get around on my own steam, with or w/o aids is about as good as it can be! Its a joy to be able to even go to the grocery store on MY own w/o a scooter? And, it’s good for me! Set the bars low at first? Aim higher each time! I truly hope I’ve not scared you? But that is a reality w/any chronic medical condition!
Keep faith in yourself and how much you can improve!
Laurel? I’d sit down and talk hard facts with your docs! You can’t penetrate their envelope unless you try!
Good luck and hope for you truly!