Well, I’m beginning to regret starting this thread. It’s apparent that some people suffer from unrealistic expectations, and have a mistaken view that medical experts exist solely to serve their personal needs. Anything less than that makes the latter subject to appallingly flippant — and unfair — criticism. Science depends on data and evidence. You can’t expect anyone to make flawless predictions or express certainty in their conclusions when data and evidence are scarce. That’s one of the things that makes being a GBS patient so difficult; there is much that remains unknown. But lashing out at medical experts is not going to improve your situation, except perhaps to make you feel good because you’re “brave” enough to stand up to the “big shots”.

And I guess I had unrealistic expectations that participants in this forum would show some decorum — *in spite of* their often difficult and frustrating health situations. For that, I apologize.

Let’s not get into name-calling, please. In defense of Dr. Fauci, first, the guy has been doing interviews nonstop for 6-7 months, trying to explain medical commonsense to people in the midst of horrible mis- and dis-information about COVID emanating nonstop from the White House. He just turned 80, and he must be exhausted. God bless the man. Second, I think that his statement was not unreasonable, perhaps erring on the side of caution even when there is insufficient data to draw any firm conclusions one way or another. Maybe he will reconsider his position after having a chance to think about it. The GBS Foundation’s position is equally reasonable, although the absence of data may not be the most solid basis for concluding that the vaccine is safe for GBS patients. We just don’t know one way or the other, do we?

Hi Robert. I am 62, and a year ago at this time I was holed up in an acute rehab hospital for what turned out to be a month’s stay, give or take. My initial treatment was IVIG. My first week in rehab coincided with the low points of my condition: terrible night pain, severe leg weakness, loss of bladder control, numbness moving from my feet up to my knees…

What followed was several weeks of intense rehab, mainly physical therapy. After a month I went home — still dependent on a walker — and continued outpatient PT and workouts at home. A month later, I graduated to a cane. A month after that, I was starting to walk on my own. Other symptoms were markedly improved. My recovery was really accelerating during this time. I was driving and returned to work by early January, and not long after that I was able to run some and walk long distances unaided. By Spring I was maybe 80% recovered, by my estimation, and I continued to improve with each month. I’m a very active person, and I think that being in decent shape and doing a lot of physical activity had a lot to do with my recovery.

The symptoms I have still have are numbness in my right foot, what one might call “slightly reduced” bladder control, as well as occasional trips or stumbles that seem attributable to the GBS, and possibly the foot numbness. Perhaps the it’s damage to the same nerve area that causes all of these things. But these are pretty minor things compared to what many people are experiencing, so I consider myself extremely lucky.

How about you?

@jon, I definitely consider myself lucky, and not just within the world of GBS. The experience at the rehab hospital was a real eye opener. I am unable to walk, though, unless you count hobbling around with a walker as walking.

fwiw, the neurologist has dropped talk of additional treatment pending the results of the EMG.