Update 10/27/2008

October 27, 2008 at 9:31 pm

1st of all, thank you all for your input on immunizations. I have not been immunized to date. I return to the neurologist on 11/5 so we’ll see what he has to say about my decision then…

My PE treatments are going well and are effective. I have regained a lot of motor control, sensory, and strength in both hands and feet. There have been very limited times when my walking gait feels normal and I’ve even sort of jogged (about 5 feet). Woohoo! My “ring” toes and the pads of my feet around the toes feel the worst now. I do have movement in my toes though and my ankles are moving well and a lot stronger.

The bad news is that I am supposed to go 3 weeks between plasma exchanges and to date the longest I’ve made it before “feeling” I need another treatment is 15 days.

“Feeling I need another treatment” means I feel heat “inflammation” in my feet and fingers and I feel the “pins and needles” and numbness returning in my fingers, the palm along the outside by my little fingers and a surface numbness in my lower legs up to the inside of my knees. I also have had a low grade headache and felt kind of feverish. When I get to that point I call the blood center and schedule another round of PEs. (I get back to back PEs on consecutive days.)

However, by doing so I am staying on top of my CIDP. I am removing the bad antibodies and my myelin is repairing faster than the bad antibodies can do more damage. So, I don’t regress much and my health is overall improving day by day and week by week. Those closest to me notice the improvement and comment on it. And the physical therapists seem to be amazed every visit (I go twice a week).

People ask if I am getting over CIDP. I say, “no there is no cure. It is going to be a life long battle unless God intervenes.” And then I ask for their prayers.

I apologize if this is too verbose. And I sometimes wonder if my “story” is beneficial to anyone. But I feel strongly that others who have shared their stories have benefitted me and I feel lead to do what I can as well.

And since this thread has so many “hits”, I will continue to keep posting.

May our God richly bless you all …