Reply To: Husband diagnosed with atypical GBS

December 3, 2018 at 11:40 pm

Your husband’s condition is similar to mine. It’s good that Plasma Exchange (PE) has helped him, IVIg never did anything for me, except hurt my pocketbook lol!

I was put into a rehab program after the first month of contracting the disease. It was a waste of time and money for me, nothing was accomplished, I was still paralyzed and hospitalized. Then they gave me PE, that caused me to start to recover. Unfortunately for me, PE came too late. After 3 months of suffering, I had severe Myelin and Axonal damage. I’m convinced I would still be walking today had they given me PE at the beginning.

I have regained some of the movement and sensations I had lost. It took several Rituximab treatments to help my body rebuild some of what GBS/CIDP took away.

Your husband should continue the PE. I had about 50 PE treatments in total over a 6-9-month period. A “port” is the way to go for PE! PE helped put me in remission. I wish it and the Rituximab would have repaired me, but it seems I have permanently lost functionality.

Keep up the treatments and look into HSCT. Your husband is young enough that HSCT may work for him, if you can afford it!