Relasped hard

    • August 20, 2019 at 9:00 am

      Hi everyone, I thru some hay into horse pen and lost my balance on the 10th of this month 5 days later I could not walk. This seems like a very short period of time to regress so much. I have not been getting the full benefit of 30 days between IVIG infusions most months about 25 days are good and last 5 I have small issues but not this severe. I am planning on discussing SCIV with new neurologist Oct. 18th and maybe other meds to keep me walking, I spent 22 hours in emergency in a side “room” cause staff neurologist did not message about me till I was in my normal hospital room, not happy about that!

    • August 20, 2019 at 10:27 am

      I originally began IVIG EVERY 4 weeks for three months. I was good for the most of 3 weeks with little fatigue. However, when I got to week 4 I was a “slug.” The fatigue and tiredness were extensive as well as increased balance issues. My discussion with my neurologist was increase dose or reduce interval. We chose to reduce interval to every 3 weeks, which has been ideal for the past two years. I do experience some fall off the last few days before my next dose but nothing extreme. I share this as a discussion point for you and your physician on direction to take.