Guillain-Barre syndrome is an auto-immune disease that affects your nerves. As a result of my service during the Gulf War in August 2011, I became very ill due to complications from chemical exposure, as well as other factors including the exposure to burning oil wells, and other incidences that affected my health in a negative way. From August, 2011 until my early retirement from Southern California Edison I spent several months in and out of the VA Medical Centers in Loma Linda, California and W. Los Angeles, California being treated for seizures, Guillain-Barre syndrome, fibromyalgia, skin conditions, and other health issues attributed to chemical exposure, TBI, and “Gulf War” syndrome.
Over the last 6 ½ years I have recovered enough to have the medical release on my driver’s license removed and I no longer require mobility assistance. However, I do have a fully trained service dog, Ronnie, who is certified by Service Dogs International. He was provided to me by the VA, when I was at my worst, for seizures, mobility (Guillain-Barre syndrome) and PTSD. Furthermore, I’ve been rated as 100% combat related disabled due to my service in the Gulf War.
I began having neurological issues in the early 2000’s manifesting symptoms of numbness, tingling, prickling, pins and needles sensations in my fingers, toes, ankles, and wrists. The symptoms would come and go with some occurrences being worse than others and some periods lasting longer than others. But, it was August of 2011 when I realized that something was seriously wrong when my feet and hands became completely non-sensory.
What had begun years before with sporadic weakness, tingling, and loss of sensation in my extremities had, as usual, started as tingling in my feet and toes and fingers and hands, but was now moving up my body. I had never lost complete sensation before. This time within a week I could no longer feel my feet or toes and several fingers on each hand. The tingling and weakness began spreading rapidly. These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form, Guillain-Barre syndrome is a medical emergency.
Like most people with this condition, I had to be hospitalized to receive treatment. By August of 2012, I had lost sensation, completely, up to my shins on each leg and up to my elbows on each arm. While I was being treated for Guillain-Barre syndrome I was also being treated for the frequent seizures I’d been having in conjunction. Thankfully this was as bad as it got for me. From August 2011 through October 2014 I literally spent 50% of my time in the West Los Angeles Veterans Hospital or some of that time at my local VAMC in Loma Linda.
From August 2011 through late 2013 as the weakness in my legs and arms spread upward body it began to severely affect my life as I was unsteady walking and sometimes had an inability to walk or climb stairs. I had difficulty speaking, chewing and swallowing with severe pain that felt achy or cramp-like and was worse at night. The difficulty with bladder control was embarrassing because I would frequently wet the bed.
Most people with Guillain-Barre syndrome recover completely or have only minor, residual weakness, numbness or tingling. Around 3 percent of people with Guillain-Barre syndrome experience a relapse. I would say that I have recovered 98% because I did not fully recover sensation in my fingertips nor the bottom of my feet. But, I have many remaining years of a productive life and am capable of accomplishing many things.
This experience was an eye-opener for me and because of it, my body is now sensitive to many chemicals and preservatives. So, I eat much healthier and abstain from use or consumption of as many chemical products and food preservative chemicals as I can because they negatively affect my body, sometimes within minutes.
Though the exact cause of Guillain-Barre syndrome is unknown it is often preceded by an infectious illness such as a respiratory infection or the stomach flu. However, many others, like myself, have contracted Guillain-Barre syndrome through chemical exposures, or simply by receiving the flu or pneumonia vaccine.
There’s no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects from it, such as weakness, numbness or fatigue. I still suffer from all three lingering effects; my numbness is sporadic and only in my fingers and toes, and hands and feet. Also, I fatigue easily and chronically and often have periods of weakness.
Once thought to be a single disorder, Guillain-Barre syndrome is now known to occur in several forms. The main types according to the Mayo Clinic are:
- Acute inflammatory demyelinating polyradiculoneuropathy (AIDP), the most common form in the U.S. The most common sign of AIDP is muscle weakness that starts in the lower part of your body and spreads upward.
- Miller Fisher syndrome (MFS), in which paralysis starts in the eyes. MFS is also associated with an unsteady gait. MFS occurs in about 5 percent of people with Guillain-Barre syndrome in the U.S. but is more common in Asia.
- Acute motor axonal neuropathy (AMAN) and acute motor-sensory axonal neuropathy (AMSAN) are less common in the U.S. But AMAN and AMSAN are more frequent in China, Japan, and Mexico.
The Mayo Clinic recommends that you contact your doctor if you have mild tingling in your toes or fingers whether or not it seems to be spreading or getting worse.
According to the Mayo Clinic, “Guillain-Barre syndrome, your immune system — which usually attacks only invading organisms — begins attacking the nerves. In AIDP, the most common form of Guillain-Barre syndrome in the U.S., the nerves’ protective covering (myelin sheath) is damaged. The damage prevents nerves from transmitting signals to your brain, causing weakness, numbness or paralysis.”