July 1, 2013 at 5:21 pm
Our GBS/CIDP Foundation is sometimes overlooked. But I think it is a great resource for those of us with CIDP.
One example and it is a personal one.
8 years ago I had a reaction to IVIG was put into ICU for treatment and observation. My Neurologist said; “That’s it! No more IVIG. So I went from using the local hospital for a few hours once a month to driving in the mountains down to a major medical center for plasmapheresis. This meant 5 trips of 2 and 1/2 hours and 5 days on the machine every 4 weeks.
From the foundation at its bi-annual symposium I obtained the information or IVIG that caused my neuro to put me back on IVIG with a different brand, pre-medication, and different infusion rate.
I now spend 5 minutes on the road and 6 hours once every 4-8 weeks and am doing well.
Hooray for the GBS/CIDP FOUNDATION!
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