Eight Months with Guillain-Barre Syndrome

Since I did a mid-month update in September, this entry will be fairly short. It’s been two weeks since the second round of IVIG. I wish I could say that as a result of the treatment, I was completely healed and back to normal.

Alas, that is not the case. The IVIG seemed to have little-to-no positive effect of my GBS. After about 6 days of feeling like crap from the treatment itself, I thought I was feeling better, but after a long couple of days, it seems like I have had little improvement over the way I felt the  day before the treatment began. But it also doesn’t seem to have made anything worse, so I guess that’s a plus.

The good news is that I do seem to be healing, albeit still on a slower pace that I would like. I can start to read more now, without the side-effects I had back in May and June. My lows aren’t as low as they used to be. My highs are higher. I have many good hours each day, and just a few hours where I “feel it” and need to slow down. But I still do have those hours, and over-exertion definitely triggers them. I won’t be breaking concrete anytime soon. But I didn’t do much of that before I got sick either.

Aside from the numbness, which comes and goes, the most annoying side effect the last month has been constantly losing my voice. Whether or not that has anything to do with the GBS, is still up for debate. I can’t talk for very long (i.e. more than 10 minutes) before my voice gives out, and my throat starts to get very scratchy. It could be the result of a cold, or irritation caused by something as ordinary as acid reflux, but I thought I’d mention it in case anyone else with GBS has had similar issues.

At this point, it’s back to the previous plan of giving my body time to heal. Whether that takes another month, or two, or six, I don’t know. It is quite frustrating to not be able to set a definite timeline, but I’ll cope. With something like this, you just don’t have much else you can do.

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