19 months with Guillain-Barre Syndrome
19th months have now passed since the onset of Guillain-Barre Syndrome in February 2012. August, was, like so many of the last few months, filled with ups and downs.
At the end of last month, I began a slow recovery from a stomach bug that knocked the stuffing out of me for the first couple of weeks of August as well. I ended up losing about 10 pounds before my weight stabilized, and am now beginning the slow climb to get back to my ‘playing-weight’ of 175.
Unfortunately, the illness weakened the muscles around my neck, and that caused a disk in my neck to destabilize (I have a history of neck issues). I spent 10 days fighting debilitating migraines (including massage therapy, chiropractor, ice, and heating) before I was able to get it under control with exercise and a new prescription for a non-NSAID anti-inflammatory called CeleBREX. The CeleBREX doesn’t reduce the inflammation as immediately as plain-old Ibuprofen, but it also doesn’t hurt my stomach as much, and one dose lasts for 24 hours.
But what was probably the most effective treatment for my neck was resuming the exercises I learned in physical therapy last winter. I’d slacked off from doing them when I went back to work, and when the stomach bug struck, everything went to hell so quickly, I couldn’t recover. I’ve learned my lesson, and am now making sure that I do the exercises at least 6 days a week, even if my GBS symptoms are bad that day. If my neck goes, I don’t sleep well, and my GBS symptoms are worse. That downward spiral is hard to stop once it starts.
I did see both a gastro-intestinal specialist and my neurologist in August as well. I’ll be having an upper-GI scope done in September to check to see if my over-use of ibuprofen caused ulcers which made my stomach issues worse. I’ll also be having a final follow-up head-and-neck scan done to make sure nothing has changed with regards to the damage caused by the GBS.
My neurologist also pointed me to a likely cause for my GBS: campylobacter. The description of the symptoms of that match up very well to what I had back in January 2012. It could also match up to what I had in July of this year. My neurologist suspects that my body kicks into high gear now when exposed to it, and that could have made my GBS symptoms worse this summer. So, no more raw chicken for me…
In an effort to try to reduce the stomach issues further, my neurologist suggested I try a muscle relaxant called Flexeril instead of the CeleBREX. I took it for the first time right before I went to bed on Saturday night. I slept for 11 straight hours (which was fine). But when I woke up, my GBS symptoms were horrible. I had no sense of balance. My legs would barely hold me up. I couldn’t keep my eyes open. At noon, I went back up to my room and slept for 2 more hours. I was three in the afternoon before I felt half-decent, but even today (36 hours later), I don’t feel quite right. Never again.
On the upside for the month, my kids, my wife, and I made a week-long trip back to Canada to see my family near the end of the month. I was worried that the trip would knock me down, and set me back, but it really didn’t. I was able to rest when I needed to. The only mistake I made the whole trip was accidentally drinking a cup of non-decaf tea one day. I had a pretty good case of the numbs after that. So I guess I’m still not ready for coffee yet either.
I spent little-to-no time using computer screens during the trip, so my eyes seemed more relaxed when I got back. I was able to get up first thing the morning after our return, and headed into work for a full day with no problems.
I don’t think I’d be able to do a really active vacation yet (like walking around Disney, or hiking on Mt. Rainier, or a week in Rome), but a trip to an island somewhere with plenty of sitting by the pool or the beach sipping… well, sipping something with no alcohol in it… should suit me just fine.
September is shaping up to be a busy month, with the kids starting school this week, a bunch of appointments, my regular work, and editing that needs to get done. But I’m also going to stick by my neck exercises, and resume my vision therapy to see if I can’t get my eyes closer to normal as well. That’s the plan, anyway.