My GBS Story

May 16, 2006 at 8:08 pm

Thank you, Teresa, for your encouraging words. Today was a warm sunny day and I walked outside with the crutches and with hubby Ken (yes, that’s his name) — it felt very good!

My story started with extreme pain in my left leg. Since I have a hip replacement in that leg, I assumed it was the cause. A trip to the ER proved the hip was okay and I was sent home. The next day the pain was in both legs and I couldn’t walk. This time the ER found that I had a systemtic staph infection, which almost did me in. Drs. didn’t concentrate on the paralysis until after I was stabilized. I remember having a CAT scan, MRI and many lab tests. Fortunately, I didn’t need a respirator. However, I had IV feeding, bags of antibiotics, units of blood, a tube down my throat and eventually more than one IVig. I never did have a lumbar test but had two EMGs. I was in the ICU for 11 days, hospital a month and rehab 3 months. While in rehab I also had Shingles.

The infectious disease doctor never did determine how I got the staph infection and all my doctors said they had never heard of a connection between this particular staph and GBS.

The paralysis stopped at my neck. My arms started coming back fairly quickly. At first a hoist was used to get me up. It was such a thrill when I first managed to do a standing transfer. For quite awhile, my left leg needed a cable type device to keep it in line. That is gone now, but I still use a plastice brace on my foot and leg.

I’ve had both occupational and physical therapy since coming home. Now physical therapy continues twice a week and Ken and I work together on the other days. All of this leaves me with the greatest admiration for PTs because they got me to do what I never thought I could!

I still have the sharp pains in my legs and feet. Lyrica helps me with that, but there are times when I have to add Vicidin. And, of course, I take a mood elevator! 🙂

I’m wondering if anyone has a problem with rashes?

Gotta go. Thanks so much for being there!