Update on Me–Ryan

    • Anonymous
      May 9, 2011 at 4:38 pm

      Hey everyone,
      I just finished my 1st year back at college, since i got diagnosed and i am doing GREAT, i am still seeing improvements even after a year of doing chemo. I still haven’t gotten all of my movement back in my feet but i am being optimistic and i know it will come. So, I thought it was going to be one of the hardest things ever going back and not being able to do what i have always done. I have definitely accomplished a lot within the past 2.5years, and i don’t regret any of it. Next weekend i am walking in a 5k, and i have about 30 people walking with me to support me. I never thought i would be able to do it, and im still not sure that i can, but i am going to try anyways. I remember when i use to run in them all of the time, and now i can hopefully walk them.
      I have decided that i am going to do as much stuff as i possibly can before i relapse again (Hopefully relapsing will never happen again).
      I was wondering if anyone knows when the next symposium is, and where? I really want to go to the next one to meet people with this disease, i have only talked to them on the phone or through facebook, but meeting them in person is even better.

      I hope everyone is doing great!!!


    • Anonymous
      May 9, 2011 at 7:10 pm

      Three cheers for you! You have a wonderful attitude, and I like what you have written in your profile under interests: “What I can do, I do.” Well said.

      I don’t know when/where the next symposium is; I wrote just to wish you well. Keep up the good work!


    • Anonymous
      May 9, 2011 at 9:57 pm


      I am very proud of you. I am the mom of a 7 year old with CIDP, onset 5-8 months of age. I hope he will have the same attitude about life that you have. You sound like a great person.

      We have never attended a symposium but would also like to go to one. Maybe it will be in our area one day, the South, and we’ll be able to make it.

      Good luck

    • Anonymous
      May 10, 2011 at 10:58 am

      It is so great to hear from you & that you care enough to keep in touch. I remember your darkest days, when I used to talk to your mom on the phone; suggesting to her that you needed to try cytoxan infusions. You should talk to Emily (a young woman who used to be on the forums,) as your stories are very similar, only she was much sicker than you, being hopitalized for many months until she received cytoxan. The last I heard from her she was doing wonderful, even mountain climbing! She lives in St. Louis, MO & the last phone number I received from her is 314-550-3112.

      I do believe that the younger one is, the better chance one has of making a full, or at least a much better recovery. My roomate at Mayo was 60 & I was 48 back in 2002. Our stories were identical, yet at that time she was in better shape than I was. She never got out of the wheelchair, she still needs aids to come in & care for her, also has a wonderful husband who cares for her. But she never had the cytoxan protocol, so I wonder was it that treatment that gave me my life back, or the age difference?

      I was told by my neuro Dr. Gareth Parry that if the cytoxan worked I would not relapse, & my treatments were in 2003. So far I have not lost anything I gained back, although I didn’t get quite to where you are today. I still wear AFOs, have some weakness in my knees, & my fatigue is still bad. But I lead a pretty good life. It is always wonderful to hear how wonderful you are doing, keep up with your college studies & keep in touch with us via the forum. BTW I was reading on the Facebook CIDP forum yesterday, & they mentioned that the next symposium might be in Las Vegas? You might want to check out that forum, as there seem to be a lot of young people on there.

      Blessings, Pam