All about Guillain-Barré syndrome: Ray's story!

I had a severe bout with AIDP in 1995 beginning 12 days following a flu shot.

The bulk of the attack seemed to be to the feet and though I never felt any pain as such, it did feel like blood flow across the feet had ceased and there was a buildup of pressure, as if from blood pressure in the feet.

Though my gbs attack was severe (30 days in ICU, mostly on the vent), I was able to walk (poorly) unassisted from the hospital after 21 days of rehab. My feet were most severely affected, and though there was a lot of improvement with regrowth of the myelin about one year into recovery, problems left were more than ideal.

I was left with wild, tingling sensations in the toes, back to front of the foot, and almost numbness from there back to the anklebone and heel. Because I had learned to lean backward in rehab to counteract weak ankles, I was able to walk fairly well and left the hospital after 21 days of rehab under my own power.
From toe-base to heel I could feel pressure from lower tendons shortened by the condition and following soreness from resulting tendonitis. Had no feel for where the ground was as I walked, and just stepped out in faith that it was there, but had at least become able to stiffen the ankle enough to discard the backward leaning.

The fact that the neuro persisted with plasmapheresis rather than going for IVIG is, in my opinion, why the feet were so badly affected. Initial attack was to the Myelin (nerve coatings of the feet), but when IVIG was withheld so long, attack apparently got into the central nerve (Axon) and recovery there runs from slow to never. This is why I am so amazed, when a lot of recovery returning more natural feeling to the feet occurs, in my seventh year of recovery.

I was 63 when the original attack occurred and was left in bad straits because of 30 days with no food (other than the drip). I had lost 60 lbs. Of course, the muscles are consumed first in starvation and I was extremely weak and dissipated by the time I entered rehab.

Too strenuous outpatient therapy resulted in my one relapse in the third recovery month and 7 IVIG infusions were required to put me on the comeback trail. I took all recovery therapy unto myself after that. I did very little in hard physical effort for the next year, not wanting to bring on another relapse. Then I purchased a one-year membership at a local gymnasium and went to work on the feet and legs which were my worst problems.
They were wasted by 30 days in ICU with no food other than the IV. Still awkward, with continuous feeling of cold in the feet. Foot sensations were jangling in the toes followed by almost no sensation back to the anklebone area. Worked out 30 minutes, 3 days weekly for that year and regained ability to rise "no hands", which was so necessary to maintain my house and car.

Then, a few months ago, I was walking down the driveway to check the mail and discovered my stride had returned!!

Recently, the entire mid-foot area has regained most sensation and reflexes in the feet seem to be getting much better. Over the past few weeks I slowly began to realize that the soles of my feet (approximately 1/4" thick) were becoming sensitive to pressure again and presenting a "normal" feel.
Later, I began to notice feelings of warmth beginning to move between heel area and toe base. I can also feel the upper skin areas on top of the feet from ankle to toe. This is especially noticeable when I tilt the toes upward.

I still am not good on ladders. Legs are still somewhat stiff and still under-strength, but I recently climbed the disappearing staircase into the attic and replaced the high-temperature limit switch in my overhead furnace.
For someone younger, recovery would probably be more rapid and complete (I become age 70 in February) but I believe that if I live long enough, I may someday see complete return of foot function!!

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