Reply To: Husband diagnosed with atypical GBS
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!