God bless you…

Ken,
How you have suffered, it is just not right or fair, but I have learned that life is not fair. I was also in that 5%, I remember after 4 months of being inpatient at Mayo back in 2002 (my 4th hospital, supposed to be the best in the world?) when the team of 5 neuros came in & said that there was nothing more they could do for me. They told me that my death would be much like ALS where the nerve destruction would eventually go into my diapragm & lungs & I would not be able to breathe anymore.

I was just fortunate that my husband was able to get me into Dr. Gareth Parry in 2002 at the U of MN who put me on 9 months of cytoxan infusions. Today I still have to sleep a lot, wear AFOs & take a cane with me, but my life is otherwise fairly normal. My CIDP was arreseted & I had 2 years of nerve healing, allowing me to walk again & get most of the use of my hands back. Ryan is going through the nerve healing process right now. I wish you would have been able to get the cytoxan ifusions sooner in your treatment program. I will pray for you that you can bear this stage of CIDP…