Update on Tim

July 12, 2009 at 9:45 am

I thought I’d update this thread because it was the blow by blow from the beginning for me.

I eventually went on steroids in November after the GBS/CIDP symposium and
was hopeful that would work. a few weeks went by and I continued a decline
as my steroid dose was dropping every two weeks. I put myself back up to 60mg Prednisone and got really weak.

Called the Dr and he weaned me off the Prednisone and Hee Haw’d about my diagnosis being MMN or CIDP. I responded to Pred Like I had MMN but have Pain Like CIDP. at that point I need to come off Prednisone and was admitted
to HUP Phili for Trial of IVIG.

Within 3 days I no longer needed a cane and shown marked improvement.
We went on with 6 months of 2gm/kg dosing or 170 grams gamunex.
Had a follow up with Brown in April. By this time I was able to run but in pain.

Just had a followup July 9, 2009 and I have returned to almost full strength.
Dr has ordered another 6 months of 170grams per month or 2gm/kg dosing.
He wants me back to 100% He told me he has never seen such a response to IVIG as with me. He has been dealing with neuromuscular disorders since 1975. this made me very happy. After January 2010 he will reduce the amount and see how I do. I feel Blessed to say the least.

I hope all the best to each and every one of you. I have always been checking in from time to time but have been working alot. God Bless You All.–tim–