Reply To: Six Months Post Stem Cell Transplant (sct)

May 9, 2013 at 3:49 pm

Hello there, Ted here from Philippines.I’m so glad having read your post.
I find it very informative and inspiring. I’m starting to learn more and
more about CIDP. I have been carrying this illness since October 2010. Being in
the Philippines it is so hard to find an experienced CIDP neurologist.

I had been with lyrica 150mg before being diagnosed on CIDP.
Though with lyrica I was still deteriorating. Deterioration
went on due to wrong diagnosis. Until we decided to go to a neurologist
and had a lumbar tap, there it was found out that I have CIDP.

I have been taking steroids (Prednisone)for more than a year
from 60mg/day down to 20mg/day and Gabapentin at 1,500mg/day.
Pred stopped the deterioration while gabapentin minimizes the numbness
and the tingling. However, I don’t see any improvement on my strength.

Now, numbness and weakness are in both legs but more on the left.
Deterioration affected approximately 75%on on my left hand and
50% on the right. I can still stand and sit on my own but cannot
walk without a walker. My wife assisted me in going to and from
the bath room.

I’ve been searching a lot in the internet to find a local CIDP neurologist
but could not find any. My present neurologist is not fully equipped with
the knowledge of this. Sometimes, its my wife who gives the idea first before
she talks about a treatment. But with God’s help, I believe I will find one soon.
Please help me pray that I will. How I wish to go to USA for the treatment
but I could just not afford for sure.

Thanks for the chance to share my story. God bless us all with GBS/CIDP!