I just thought I'd post an update. I've been in the hospital the past two weeks, and I just got home this afternoon. I had IVIG treatment as usual Monday and Tuesday that initial week, but it felt as though I'd done nothing at well. I had zero improvement. I kept getting worse and worse. By Friday, I finally had to go to the ER. They started additional IVIG treatment, right in the ER, and we did two more days of IVIG after that. Usually IVIG has really helped me, but I had no response at all to the three additional days of treatment.

My regular neurologist was still out of the country, and the substituting neurologist thought I should have a spinal tap. I hadn't had one previously. So now I've done that. Then she thought I should try steroids, which made things worse instead of better. When my neurologist finally returned, I was an even bigger mess than when I arrived in the ER. We were trying to decide what to do, and we finally decided to try plasmapheresis, which we'd never done previously. Today was my last treatment. It was astonishing. With every treatment, I've increased in my ability to walk, talk, breathe, and move my arms. I can even hold up my eyelids better. My daily breathing tests went up miraculously! They are the best now that we have ever recorded! This may be temporary, but it is really quite amazing. I have no idea why I stopped responding to IVIG, but it would appear I'm having a far better response to plasma exchange than I did to IVIG. Now I get to see how long it lasts, although my doctors are imagining that I may need to return for other treatments later. For right now, I get to live my life (carefully, still taking Mestinon and living reasonably) and see how long the effects last. When I start slipping, I'll contact my doctors and we'll get the ball rolling so that we can do plasmapheresis again.

Take care,
Erin