18 Months with Guillain-Barre Syndrome

July had its share of ups and downs related to my recovery from GBS. There were times I felt absolutely fine—almost as good as I did before the first symptoms set in February 1,  2012.

But I also got a good taste of what I fear my life, post GBS, will be like when my body comes under stress from a secondary force. And that taste was rather hard to swallow.

A few weeks ago, I had a brief fight with what I thought was some kind of stomach bug. For a week or so, I battled a general sense of malaise: my stomach objected to just about everything I ate; I was light headed; I had short bouts of nausea that I blamed on the new lenses for my glasses. Truth was I don’t know what caused it. But while the symptoms of that little ‘bug’ or whatever it was were going on, my GBS symptoms, the fatigue, the numbness returned just a bit.

But that little bug was nothing when compared to what hit me 9 days ago. It started with a couple of episodes of light-headedness, and a little bit of nausea. I was scheduled to attend the PNWA conference that afternoon, but instead of going to that, I came home and rested, with the hope that with a little rest, I’d be all set for a full weekend.

But the symptoms got worse, and multiplied. Every time I ate anything, I’d get terrible pain throughout my abdomen. The nausea would return, and my head would float three feet above my shoulders. I went in to the local urgent care clinic on Thursday night with the hope that they could give me something to get through the busy weekend. But Friday was a no-go. My symptoms were worse. My arms and legs got really weak. I had tremors in my hands. I couldn’t maintain my balance. Numbness began spreading through my body.  couldn’t eat anything but crackers, rice and toast without crippling stomach pain. I thought I was in a full-on GBS relapse.

By Saturday, I took myself into the ER, with the hope they could give me something for the abdominal pain, which doubled me over every fifteen to thirty minutes in tears. I feared that something more serious than a stomach ache was going on. The last time I’d gone into the ER, I didn’t come out of the hospital for five days, and my life changed forever.

The ran some tests, gave me an IV to replenish my fluids, and gave me a dose of what they call a “GI-Cocktail”: a mix of Maalox and Lydocaine designed to numb the esophagus and stomach. If it was an ulcer causing the pain, it’s designed to stop the pain right away. That’s some weird shit to swallow, especially when you’re already worried that you’re in a GBS relapse, and you may, at any minute, lose the feeling in your mouth and throat.

The good news is that the cocktail, along with some other meds they gave me, broke the pain cycle, and allowed my stomach to relax. The bad news is that we really didn’t get a final diagnosis. It could have been a stomach bug (though no one else I know got it, thank god). It could have been food poisoning. I had Salmonella poisoning back in 2004, and this felt a lot like that, though without the vomiting and fever. It still could be an ulcer. I’ll see a GI specialist later this month to see what they think.

It took me the entire week to recover from this little bug. I lost 7 pounds in 6 days. I missed the whole PNWA Conference. I didn’t miss any work time (other than the first Thursday afternoon, and Friday, which I was already scheduled to be off), as I was able to work from home every day. But the GBS numbness returned with a vengeance in my arms, hands and face. It took me until today to get energy back to walk further than the mailbox. I felt like it was July 2012, not July 2013.

But the hardest part of this bug wasn’t the physical symptoms—though they were bad enough. The hard part was the mental aspect. First, the bug was close enough to the original bug that caused my immune system to go haywire, that I feared the bug alone would cause a GBS relapse. I couldn’t go through another full-scale GBS relapse—not when I was so close to getting my life back to the pre-GBS style.

Second, I couldn’t stop my mind from drifting back to that little slice of a chance that my original disease wasn’t GBS, but MS. We never got a 100.0000% diagnosis that what I had was GBS. We got it to 99.9999%… the 6 month follow up MRI I had done last August showed no absolutely no indications of MS. But when you’re laying on the couch, and the feeling is gone in your left arm, and your left eye is jumping like it did those first days in the hospital, and you can barely lift your legs, your brain doesn’t accept anything but an absolutely conclusive test. I struggled mightily, trying to figure out what I would do if this wasn’t just a stomach bug. That kind of worry doesn’t make recovery from a stomach issue any easier.

As of today, I have most of the feeling back in my body. My fingers are a little stiff. I’m a little low on energy. I’m a little nervous eating anything spicy or fruity or greasy. But I’m a lot better than I was a week ago. In a week or two, as long as nothing else happens, I should be back to “normal”.

On the plus side, I can say that this was the worst sickness I’ve had since GBS, and though my symptoms returned, they seemed to have faded within a matter of days. It doesn’t seem to have set me back months. I guess that’s a good sign. Sure, I’ll still worry every time I get sick, that I’m going to have more symptoms. But if I just expect that I’m going to have them, and know that I’ll bounce back just fine within a week, perhaps I won’t get so low mentally and emotionally, and I’ll recover even faster.

%d bloggers like this: