Reply To: Getting sick after GBS

Most of us that have gotten GBS continue to have residual side affects from it. It’s a rare and tricky disease to diagnose and, as a result, we seldom get the treatment we need when we need it, and we need treatment immediately when the disease hits. The longer it takes for treatment, the more incomplete our healing often is.

For many of us our poor recovery is the fault of our insurance companies that will deny coverage without extensive justification to confirm the disease. In the end, insurance companies will spend quite a bit more for our on-going care than the money they saved by throwing “not medically justified or necessary” at us when we are first diagnosed with GBS.

I was not given Plasma Exchange (IVIg didn’t work for me) until about four weeks after getting GBS. That delay has left my legs unusable and I must use a wheelchair to get around. My insurance company denied coverage of my wheelchair and I had to appeal their decision through my State Dept of Ins. It took me close to a year to have their decision overturned and my wheelchair paid for.

Like you, I was an athlete before getting GBS. Like you too, I ate excessively too much for my lack of exercise after getting home from the SNF (6 weeks in hospitals, 12 weeks in SNF) and gained over 100 pounds. I’ve lost all that now, but it wasn’t easy learning how to eat without relying on aerobic exercise to raise my metabolism and burn off the fat. I now do 20-30 minutes of upper body weights when in bed in the mornings. Endurance is low, but has gotten a little better over time following more exercise.

I seldom sleep through the night anymore as I had pre-GBS. My immune system has recovered since I’ve been off Prednisone and my ability to fight off colds has improved. Every body seems to recover at a different rate and residuals vary too.

It can take around three years for the body to rebuild itself (as best it can) following GBS. Progress is slow because Myelin can grow back to some extent at the rate of 1 millimeter a day, which is only 0.0032808 ft. This is agonizingly slow but there has been little that can be done to speed up the process, except for the very expensive and experimental stem cell transplant treatment.

You are still in the regrowth stages following GBS. You still have hope that many of the symptoms you are experiencing today may diminish or go away. Try to be positive about your future and don’t expect that all things will get back to pre-GBS levels.