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.

I can relate to what you are feeling regarding loss of hope. However our friend Jim Is absolutely correct in stating you are still in the early stages and have a chance of a full recovery! I was diagnosed with GBS in December of 2014. Unfortunately, I had been sick since September of 2014. Because of the delay in my treatment, my neurologist has told me I may never regain the distal nerve damage that occurred due to lack of initial IVIG treatments. This disease has taken away everything that is important to me. I have been a seamstress for 30 years but my hands no longer work for me. I was always outside walking or riding my bike but no longer. Every day I hope I will feel more energy ,less pain and depression. I take comfort in the many angels around me, the fact that I am no longer in a wheelchair and most days are tolerable. Please keep on hoping and find comfort in those around you. I have recently gone Vegan and it has helped my inflammation. My sister is an acupuncturist and Chinese herbalist. She believes there is a root cause to any illness so we are still trying to figure out what mine is and fix it! Never stop trying!

Recovery can take a few years. The process can’t be made to go faster by exercize. You do need to exercise, but not to the point of exhaustion. You might get back where you were, but not in a short time. In the meantime, you need to make adjustments in your diet to compensate for lower activity. Jim’s advice is always well-informed and sound. I agree with him completely, the only caveat being that every case is unique. Recovery is not the same for everyone. Just try to make a little progress every day.

It took me a couple years before I was able to have a more positive outlook. Initially I refused to accept that my life as I had known it would never return. Gradually I came to realize that it wasn’t to be and I had to make a new life for myself. At that point I began making plans and started implementing them a step at a time. I never thought I would be driving again because I’m wheelchair bound. But technology changed all that and I now drive by myself all over, I recently logged about 1000 miles on a trip to Sedona.

Start by making a list of the things you would like to try to do. Then tackle each item one at a time listing pros and cons. This gets you focused on some new goals. Now it’s time to do some research and learn more about what options might be available to you. A great way to do this is to attend an Abilities Expo. Perhaps there is one in your area: http://www.abilities.com

I’ll be attending the one in LA in a few weeks. I always learn about new things when I attend. It’s where I learned about what I needed to be able to drive again. Hopefully you will learn some things that can help you envision a better future for yourself.

Oh, and checkout adaptive sports. You might be surprised what you could do sports-wise. I won a wheelchair tennis spectator target practice challenge in 2015. Gonna try again this year!