September 13, 2021 at 12:01 pm

Hi Mike

What a rotten story!!!  You’re correct though.  You are not alone.  I’ll give you my reader’s digest version of mine.

December 7, 2020 I was admitted to St.Peter’s hospital in upstate NY.  I was diagnosed with GBS and spent a week there and then another 4 weeks at Sunnyview Rehabilitation Hospital.  I really had no run up to this.  Felt fine the morning of 12/4 and paralyzed by night of 12/7.  All the same numbness and tingling everyone speaks of.  Couldn’t speak well, couldn’t swallow well and balance/strength were non-existent.  Same scary stuff we all went through and never heard of this condition in my life.  I had 12 units of IvIG in the hospital and it had an immediate effect on me.  I found out later that my hospitalist had informed my wife that they were going to vent me (in the absolute crush of CoVid cases at the time) but when he came in to tell me I had just received my first bottle of IvIG and Imoved my left foot a little.  I was trying to move my right foot but I’ll take what I could get.  My onset was due to a flu vaccination on 11/17.  I have been advised to this point to not get the CoVid vaccine.

I am happy to tell you that I am walking, working, driving ( a huge win as severe double vision is still a symptom I am dealing with) and doing well at home.  I am still quite numb.  My reflexes are better but still not great.  My balance is absolute garbage but I manage.  I have unbelievable tightness that keeps me from getting deep breaths without extra effort and it also compromises the timber and projection of my voice.  Not great for a salesman but again, I manage.

I’m coming up on a year with this now and while I’m better than I was I am not where I want to be.  I’m looking into visiting one of the centers of excellence listed on this site.  Do your best to stay positive.  It can be rough at times but when I get down it seems like it exacerbates my symptoms and I just lose time to extreme fatigue.  I can’t find the formula for what I can do before I’m exhausted.  It seems like a moving target.  I’m rooting for you, and everyone else dealing with this.  Hope this helps a little and best of luck to you.