Recovery rate…

November 18, 2006 at 12:28 am

I mean no offense to LyfeWithGBS, but it sounds like you might have had a rather mild case. Ever totally paralyzed for 9 months, or on a ventilator unable to breathe on your own for months? I just ask because a one week hospital stay is very short. I had a severe case of CIDP (never fully paralyzed) & still spent over 3 1/2 months in 3 different hospitals, & after over 40 IVIG infusions, 17 PP tratments, & massive steroid infusions for 8 months I was still not any better. Actually, I was not able to walk a single step until after 2 1/2 years. Not your normal case of CIDP.

The textbooks say that 80% of patients with GBS make a full recovery. Maybe they do, & they are out working full-time & leading normal lives. We usually do not hear from them, maybe one or two posts to tell us how they are back to normal. There is usually something included about how they always had a good attitude & that’s why they recovered. Or about how hard they tried? Like there are those that don’t? Anyways, my point is that not all make the great recovery that we had hoped for, but that it isn’t our fault.

I believe that everyone gets hit differently, & recovers differently. I have been on this forum for over 4 years now, & seen some with extremely severe cases make great recoveries; others with milder cases left with residuals. No rhyme or reason to it. And yes, Kelly, we here on the forum do suffer many of the same residuals that you have, fatigue being the worst. And this is the place to come & vent; who else can understand but the members of this forum? Family members will try, but they do not feel the pain, the weakness or the fatigue. If you feel like you got screwed by becoming ill at 38, I couldn’t agree more. I was almost 49, & still feel the same way; but I do try to make the best life I can with what I am left with.
Blessings, Pam