Reply To: Patient stories

November 4, 2016 at 9:41 pm

Hi Lori,

Have you looked into other possible treatments such as plasmapheresis? It’s a little more invasive than IVIG (requires placement of a Quinton catheter), but I’ve heard success stories with such treatment when IVIG fails. As you already mentioned, we all travel a separate path. When I first showed symptoms in early February of this year, the doctors decided IVIG was the first course of action. It did nothing for me and I declined further. A couple of weeks later, they tried plasmapheresis with little improvement. That kind of defeated the whole purpose of IVIG since it was inevitably filtered out of my system. With IVIG, sometimes people don’t report immediate results. It may take some time to become effective. I ended up on a ventilator in early March and the disorder eventually plateaued. During my recovery process while on the ventilator I received a handful more rounds of IVIG treatment with no results. I was also put on Prednisone for some time. Still, no results. I eventually stopped Prednisone after a while and slowly started regaining movement in my upper body. When I had a mini relapse in late July, I started IVIG again and saw immediate improvement within a matter of days. Since then, I’ve been receiving monthly treatments and have seen huge improvements each time. I’m hopeful and confident that I’ll walk again. Speak with your neurologist to consider alternative treatments. Be very vocal and advocate for yourself. Don’t lose hope! We’re all here rooting for you! I hope you find something that works for you. Keep us updated!