Fifty-nine here, a year and a half in.

I can easily understand how you feel, Matt. Especially about the fatigue, as I have it, too. Still, your story broke my heart. Have to agree with you that you are undeniably depressed. That is just my unprofessional opinion, of course. It sucks that help is no longer available to you.

Have to agree with Dellparr, you have a great way of expressing yourself. That may be the gift that you can offer others. It is so hard for GBSers to explain the condition, its residual effects and associated emotional havoc to those who have never had it. Also, GBS is relatively rare, so patients and their freinds/families have few reliable information resources. I’m not referring strictly to medical jargon, but mainly to the down and gritty of this nasty disorder by someone who’s been there, done that.

The nice thing about writing (I was a writer before GBS) is that you can do it for a few minutes at a time, as you feel up to it. My eyes (and brain) were affected, so I can’t always use the computer or read but if I’m kind to myself and don’t overdo it, I can write a bit at a time.

Sharing your story could also be very cathartic for you, perhaps help to lift some of the burden you’ve carrying around.

Something to think about, anyway. Very best of luck to you, Matt!

I can’t speak for anyone else, or with any medical authority, just from personal experience. It’s a year and a half for me and I still have a ways to go but am much better than I was, thank god.

What I’ve noticed is that when I do more than normal, my weakest muscles (right side for me) feel it the strongest. They may contract, cramp or hurt. Also, they feel weaker. Length of time depends on how much I overdid it. Can last a day or two, or longer, if I really pushed myself. Occasionally, the old nerve pain resurfaces, too.

I am awed that you are able to run again. It gives me hope, thank-you! 🙂

I think it is impossible for someone who has never had it to understand. I’ve not been able to adequately explain it to people because I can’t think of anything to compare it to that would help truly relay the physical sensations, and never mind the emotional devastation! The closest I’ve come is to let people know that what they see on the outside is different from what is going on inside. It’s the stuff you can’t see that can be far worse, especially after you become mobile again.

Re the nurse’s total lack of understanding…my ICU nurses said that they had only seen one case of GBS in their entire career (12/18/21 years). A few had never seen it before. Sometimes, they lacked patience with me but overall were pretty good. The general ward nurses, on the other hand, were pretty terrible.

I am so happy for you that you have such an understanding and supportive husband. Love that he sticks up for you and provides a shield between you and someone with so little understanding of the disorder.

You definitely need a spinal tap (lumbar puncture) to confirm a GBS related diagnosis. Any elevated protein levels will show up in the spinal fluid.

It can take even emergency room doctors a week to figure out what’s wrong with a GBS patient, so if you can talk to a physician with the information laid out by Jethro, you may be able to get a proper diagnosis sooner and get the treatment you need!

Best of luck.