May- Guillian Barre Awareness Month

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Not very often do I go into details about how complex my medical problems really are. This is the one time of the year where I go into my medical details. If anyone has questions and would like to know more about my experience with GBS/CIPD, this is the time to ask away.

GUILIAN-BARRE-SXWhat is Guillian Barre Syndrome? Guillain-Barré syndrome (GBS) is a disorder in which the body’s immune system attacks part of the peripheral nervous system. The first symptoms of this disorder include varying degrees of weakness or tingling sensations in the legs. In many instances the symmetrical weakness and abnormal sensations spread to the arms and upper body. These symptoms can increase in intensity until certain muscles cannot be used at all and, when severe, the person is almost totally paralyzed. In these cases the disorder is life threatening – potentially interfering with breathing and, at times, with blood pressure or heart rate – and is considered a medical emergency. Such an individual is often put on a ventilator to assist with breathing and is watched closely for problems such as an abnormal heart beat, infections, blood clots, and high or low blood pressure. Most individuals, however, have good recovery from even the most severe cases of Guillain-Barré syndrome, although some continue to have a certain degree of weakness.

My Story; 

When I was 17, I ended up getting very sick. I was use to being very healthy minus a cold here and there. The first time I noticed there was a problem was when we were living with some friends in Nolanville, Texas. I was riding a bike into town, which was less than a mile. I was OK at first, but on the way home, something wasn’t right. As I was heading home, I was having issues with my legs feeling heavy and it was hard to even lift my legs, let alone ride a bike or walk.

I sat down on the curb for a while and then finished trying to get home. This was in 1980, so cell phones weren’t around. I pretty much had to do what I needed to do to go the short distance. What should have taken me about 5 minutes, ended up taking me hours to get to the house.

As I walked into the door, Craig and Mary decided that I must have been trying to get out of helping around the house or something. All, I knew at the time was that I was very tired physically. I went and laid down and seemed a bit better, but still really weak. I was having a hard time walking, balancing and breathing. It soon became apparent that this was more than just a cold. I didn’t know what, but it was something I never experienced since I was always athletic.

Chuck and I were having some major clashes with Craig and Mary. They continued to think I was lying about not feeling good so I could get out of helping around the house. She was thinking it was pure laziness on my part. A few days later Chuck and I found our own place. It was a little trailer that was 35 ft long and 12 foot wide. I think it was a 5th wheel of some sort.

A few days later, I was to the point where I couldn’t walk at all. I couldn’t move my legs at all. We knew something serious was going on. Chuck took me to the ER and they refused to help me. I think in part because I had no insurance and under-aged. They also thought the symptoms I was experiencing was because of drugs. I didn’t even have the strength to argue with them. We tried different ER’s around Fort Hood and eventually one of them would see me.

A smaller hospital in Harker Heights did some testing and found that something more was going on. They also thought I was on drugs, but they found out after a spinal tap that I had raised protein levels in my spinal fluid. At that point they admitted me into the hospital and arranged for me to go to Scott and White Hospital in Temple Texas.

Chuck was stationed at Fort Hood and the Dr’s called him to let him know that I was being transferred by ambulance. Since I was having problems with breathing, that was the only option. Chuck was able to get off early and met me at Scott and White. By the time I got there, I was completely paralyzed from my forehead to my feet. I was put on a ventilator to help me breath and in ICU.

I went from being completely healthy to being on a ventilator and fighting for my life in less than a 2 week time span.. Guillian Barre Syndrome(GBS) starts at the feet and goes upward. Which is why my first symptom was with my feet and legs.

The neurologists were trying to figure out how it was that I came down with this rare disease. While they were trying to target the cause, it was determined that I ended with with Guillian Barre Syndrome (GBS) from the flu shot. At first we were thinking it was from strep throat which could have also played a role in me getting Guillian Barre Syndrome(GBS).

My parents were contacted when I was first admitted and they were told that the treatment for GBS was something called plasmapherisis and IVIG. Basically what that does is takes out the antibodies that I carry that reacted with the virus and it replaces it with healthy plasma. My parents chose not to have them do these procedures due to the cost.

I ended up paralyzed for close to a year. As time went on, I was able to regain some strength. It took close to 3 months before I could even hold a pencil or open and close my eyes on my own. My Dr’s told me that the good thing about Guillian Barre Syndrome is that it is temporary with very little problems once I was able to walk again. I would like to have a little one on one talk with the Dr’s I had then and give them a true perspective on how a person does.

Since I was a minor and had no insurance the Shriner’s ended up covering all of my medical bills. Chuck and I didn’t realize the Shriner’s were contacted, so we decided at that time that we would get married early because of the bills. Since he was in the Army, my medical would be covered. Instead of getting married on December 14, 1980, we got married on October 30, 1980.

Chuck and I went to the courthouse to get married. He literally had to carry me into the courthouse and help me hold the pen to sign my name on the marriage certificate. Chuck and I knew each other for about 6 months if that and we got married when I was 17 and he was 19. At the time I ended up loosing weight and was only 97 pounds at the time. By the time we got married, we also found out I was pregnant with our daughter Jessica. For me, this experience showed me that even though we made bad choices, God still blesses those and I know He saved me from myself.

I ended up with Guillian Barre Syndrome 3 times in addition to Myasthenia Gravis. They ended up re-diagnosing me with the CIPD variant of Guillian Barre Syndrome (GBS)

They are finding that people have quite a bit of residuals from GBS/CIPD. People with Guillian Barre Syndrome can easily die from it since it weakens the muscles around the heart and lungs.I have a great deal of residuals from Guillian Barre Syndrome. Since it is auto-immune, by body is always fighting itself. My nerves and muscles never came back to what they were. When they test the strengths in my hands and feet, they say my strength level is that of a puppy dog. On my hands I have from 7 pounds of pressure on one hand and 17 on the other. A woman should have about 50 or more pounds of pressure. My legs are about the same.

Check back in a few days for the next chapter of GBS/CIPD

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