I am Pam from MN who spoke with your mother at length when you were at your worst. My only grandson is named Ryan & I prayed for you every night, just for the strength to get through this, to keep fighting. Like you, I got hit very hard & very fast, I know what you mean about being almost paralyzed, totally dependent on others for your care. And I know all about the horrible pain, the first two years of CIDP I was begging my husband & my neurologist to chop my feet off, cried so much because of the unbearable foot pain. My hands shook terribly as well, but I always attributed that to the 1,000 mg of solumedrol I was given weekly.
IVIG, PE & steroids did not help me. I finally was given 9 months of cytoxan, which did arrest my CIDP. I still need AFOs on both feet & do use a cane half the time. Indoors I don’t need one, or on even surfaces. I take 1800 mg of neurontin (gabapentin) for the nerve pain, which is mostly in my feet, some in my hands. I am thrilled you have done so well, remember that once CIDP is arrested you can heal for up to 2 years. But if the nerves have any axonal damage, you will not get that back. If you can run, even a little, you are ahead of me. I do find the fatigue to be the worst residual though, I seem to need at least 10 hours of sleep at night; not sure if I ever really feel “normal” in that regard. But after 8 1/2 years of CIDP, I have come to a certain acceptance of these residuals. But you are so much younger, I hope you get most everthing back. It was so nice to hear from you finally!