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.
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.
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!