Love my MOM
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January 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!
Adina
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January 6, 2008 at 12:44 am
Adina,
Welcome to our group. This forum is great…without it we would all be lost.
I can’t offer much except I take gabapentin and without it the pain is very bad!
Give yourself and your mom a hug :p
Rhonda from Canada
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January 6, 2008 at 6:17 pm
Hey thanks Rhonda I appreciate the welcome & the HUG much needed right now!!!!!!!!!
Thanks 4 the gabapentin referral but that is the generic form of the neurontin (for neuropathy pain) which is amoung the list of drugs my mother is already on!!!
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January 6, 2008 at 9:57 pm
Adina,
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.
Mary Ann
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