Reply To: Father with Axonal GBS- No change after 3+ months
I think Plasma Exchange should be tried soon. If no ill affects after the first 1-2, then perhaps a couple times per week. It was the only thing that worked for me when IVIg failed to help.
I was made quadriplegic by GBS/CIDP/MFS. I was barely able to breathe on my own and didn’t need the ventilator, just oxygen and breathing devices. I couldn’t move or speak or close my eyes. I was numb all over. I lost hope and wanted to end it all, but couldn’t pull a trigger if I tried. It took 5 months for some movement to return so I could begin to feed myself again. I too had pneumonia and was placed in intensive care with those awful breathing apparatuses taped to my mouth and face. I hated it that I couldn’t scratch all the places that itched on my face or ask someone for help with that. And the catheter gave me many infections before I regained bladder control.
3 months is, unfortunately, too early to begin recovery from this awful disease for many of us. Maybe 4 to 9 months is more realistic to feel partial recovery. I’m still in recovery from 2008, but I had a bad case.
I hope you are with good doctors that have real hands-on experience with this disease. Text-book experts couldn’t help me properly and I remain in a wheelchair because they didn’t act quickly enough with the right treatments.
What is your location? Perhaps there are more experienced treatment centers near you in case you would like a second opinion.