November 4, 2009 at 10:35 am

I am so glad that Dr. Lewis understands how much Ryan wants to be better than he is, as good as he can possibly be. I remember telling Dr. Parry, I wa crying actually, that I couldn’t live like I was. We had tried IVIG, solumedrol, & Plasma pheresis for 10 months without any lasting improvement. I couldn’t walk & had no real use of my hands. He understood & I believe he felt my pain. That’s when he suggested Cytoxan, I said Yes right away to his plan. I am glad that Ryan got to see a specialist in the field of CIDP; I am so happy about that, please keep us posted.


August 26, 2009 at 7:14 pm

hi paula,

thanks for the post. the face is doing well and there is only slight droop remaining. only my eye remains affected and wont close properly, cannot wink but i dont need patch and i use eyedrops regularly. cannot imagine what the double vision must have been like, my vision still slightly blurred and my face feels tingly when i do strenuous activity.
what worries me most is my legs getting weaker every day and now i cant walk more than a few steps and it buckles.
but overall i feel it could have been much worse.
thanks for the advice and good wishes.



April 29, 2008 at 11:03 pm

WOW, you can walk on your heels? I can only dream… When we do exercises in water aerobics involving the ankles, toes, heels, etc. I just go through the motions, as mine haven’t moved in 6 years now. But I am not complaining, I am happy to be able to walk at all, even if it is with a cane & AFOs. If I were in your shoes, I would be out taking a real walk, how wonderful that would feel after this ridiculously long winter. Enjoy!