Love my MOM
AnonymousJanuary 5, 2008 at 10:26 pm
Ok just a quick overview …… My mom was of course first dx with GB in Aug 07 had ivig seemed to be OK then 3 weeks later a relapse which we all know dx becomes CIDP we have been on a roller coaster ever since she has been in & out of Cleveland Clinic since. She was getting the ivig every 2 weeks to hold off the paralysis (severe & sudden within 2 days of numbness & tingling complete paralysis) anyhow we are now on ivig 1 a week/ cellcept/ predisone/ neurontin/ etc….. etc……she had an upswing in Nov 07 & was walking with a walker for a few days a couple of steps we were so excited then SMACK it’s back!
Her DR. is hoping this cocktail will work if not she is looking at Rituxan.
I Love this forum I know I’m not alone I’ve been reading for months just thought i’d finally post my own story!
AnonymousJanuary 6, 2008 at 9:57 pm
Welcome. I am sorry to hear of the sevarity of your mom’s CIDP. Mine has been stubborn too, but not nearly as severe. It is going to take a looong time. I know you love your mom, K J loved me enough to come to this site for help and understanding for me while I was hospitalized for 5 months. That was back in late 01 and early 02. I have just this summer been able to reduce my meds. But I can do all things, just get exausted a lot. Call on the Lord, He’s a great help in the time of need.
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