Mission accomplished, Jazz. Your post says it all… there’s realism in your voice, not minimizing the challenges you face in recovery, yet at the same time, hope. It’s a missing ingredient that drives so many GBS folks into ambivalence. It’s funny how even the least micro-improvement can be hopeful, which is exactly what we all need to hear, and it does encourage. You’re a brave heart, Jazz, hold fast to your moments of grace and savor them. Our prayers are with you toward a future of significance and increasing joy.

Hi, Tarhealing,

It sounds like you have a variant of GBS that is quite similar to my own. I was diagnosed with Miller Fisher GBS in March of 2000. My main symptoms were blurred, double vision, fatigue, tipsy balance. Long range residuals included double vision (so bad I had to wear a patch) which lasted for a year, no change. I received eye surgery at the USC Doheny Eye Center, which corrected my double vision for the most part and was quite a relief. My vestibular (inner ear) system on my right side was permanently affected, leaving me with a tinge of motion sickness and dizziness, along with bouts of vertigo. I go to balance therapy off and on, which seems to help.

The interesting thing about this is that, after a period of time, the brain seems to accept all of this, and i don’t think about it like I used to in the beginning months and years. This will all get better for you, trust me. It may not all resolve, but by the grace of God, will become “doable.” And for that I am grateful.

Please respond when it’s convenient, I’d like to know more details, and whether or not any of the above is similar to what you’re experienging.

Normison

Hello, Jazz,

We all appreciate your gutsy honesty as you articulate your GBS symptoms. You’re not out of sync at all with your issues. Picture us all in a circle trading stories, I trust what we share back will be encouraging to you.

The 9 months or so post GBS were by far the hardest for me, and much of the struggle was mental. The hardest was grieving (if that’s the word) the loss of my “former body.” Mine was a Miller Fisher variant, so I suffered double vision, loss of balance, and no vestibular nerves on the right inner ear. This resulted in chronic motion sickness and having to wear a patch over one eye to function. SUPER weird and debilitating. I had been teaching elementary school for 27 years, and had to take the rest of the school year off. My entire identity was broken, for it’s all I had done throughout my entire adult life.

That was in 2000, and here I am 16 years later, alive and still telling the story! My life has taken a different path, career-wise, but it’s OK.

Please hold on to this thought… By the grace of God, your brain will, yes, will come to accept the changes that have come about in your body. And these nagging residuals will, believe it or not, become “normal” and doable. For some these symptoms clear up entirely over time. But even if they don’t, you’ll be fine.

It seems simplistic, but just as citlaw mentioned above, finding the things you can do and expressing gratefulness is the key to your own personal peace and well being. You will feel a peculiar love and grace coming near to you, helping and strengthening you from one day to the next.

Keep posting, this is a place you can vent and know we’re all listening.

Having had the Miller Fisher variant of GBS back in 2000, all was descending for me. Not so much my feet, but my hands and fingers bear the residual of always being temp-sensitive. As the winter sets in and the days get cooler, so do my hands! They feel like they’ve just been in the icebox at times. When on an outing at night, and in one place, I’m the one sitting on my hands to keep them warm. Really the least of my worries, have grown to accept this, and no longer a nuisance. Hope this helps. Norm