MY GUIDELINES FOR THOSE WITH CIDP, taken from old forum
AnonymousNovember 27, 2006 at 7:06 pm
I took some of this from an old thread that posted in 2003 and added some of my own words.
CIDP comes in two main forms, PROGRESSIVE, which means it’s just one long attack and RELAPSE/REMITTING which means it gets worse for awhile, then better, then worse again. In both of these forms the duration of an attack can vary from a few weeks to over a year. Write down ocassionally, how you are feeling, it will help you and your doctor learn what patterns you are setting.
People who have the RELAPSING/REMITTING form and do not get any treatment may find that each incident seems worse then the one before. Doctors feel that this is because the myelin (which can heal if left unattacked for awhile) never gets time to heal between attacks, so each attack gets a little deeper into the nerve or covers a bigger area. Because myelin will HEAL when not attacked, treatments are very IMPORTANT to be used to “CONTROL” (not cure) progression, so make yourself aware that even if you don’t feel stronger and better, it could still be working. This is another area where your journal can show how you are doing. If you have axonal damage, you can still heal, but it will take much much longer.
Our muscles aren’t affected at all. Instead, it is the failure of the nervous system to deliver messages to the right muscles at the right times that causes weakness. Because it’s damaged nerves problems, not muscles, you get the suddenness of loss of function. The muscles are still fine, but the nerve impulses just can’t get through. This is why it’s important to see a physical therapist to set up an exercise program that works WITH your fatigue level so you can MAINTAIN as much muscle tone as you can. And you are only MAINTAINING, not restoring. Don’t expect to feel stronger if you are still relapsing, because it’s a battle against PROGRESSION. Just maintaining is what you want to do.
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