Reply To: The ups and downs of this disease

April 14, 2019 at 5:37 pm

Hi Brian, Jackie

I was diagnosed back in August 2018. For the first two months I could not walk and when I could, my balance was way off. I’ve been receiving the IVIG infusions once a month. Since late December, I’ve been able to walk on my own without assistance, although going up steps is still an issue. I would say I’m back to around 70 – 75% between treatments. However in the last month I started see a more of a decline in my leg strength just prior to my next infusion compared to previous treatments.

I’ve been doing a lot of yard work lately and the nurse who did my last infusion thought that I may have been over exerting myself with the yard work when my nerves are still recovering.

My treatments are now every 3 weeks so hopefully I’ll experience less weakness between treatments.

As far as numbness I do experience some numbness and the “pins and needles” sensation in my feet from time to time regardless if before, after, or between treatments. Most of the numbness is short in duration but does occur anytime, whether at rest or been on my feet.