Tag: Guillian Barre Syndrome

For me this is a no brainer. I don’t take the flu shot, pneumonia or the shingle ones, Some people are die hard fans of the flu shot and wait in long lines to get it so they won’t get sick. Well, for me that flu shot caused a horrible shift in my health back in 1980. This may be the one time of the year that I talk about my experience with Guillian Barre Syndrome and Myasthenia Gravis and that is because the flu season is around the corner. I was living in Texas at the time and suddenly I started to not feel good. I have always been very healthy for the most part. Yea, I would get the cold or flu, but nothing major. I was already in Texas with my now and always husband. Chuck was stationed at Fort Hood, so there I am. I was only 19 at the time. Physically I was in great shape. I would run on the average about 10 miles a day. I was in track and field in high school, cross country and a guard. I’m kinda short, so I wasn’t too good at that though. I loved sports and I especially loved running. It was my escape from all the bad going on in my world. Once I got to Texas, I got the flu shot. I was planning on going back to school since I quite in the 10th grade and to register there, I needed to get the shots. I should point out that I ran away from home and moved in with my husband Chuck. Thankfully that worked out. What didn’t work out is the flu shot. I received the shot and about a week later I was walking into town. It was only a mile away, so not a biggie at all.On my way home, I had to sit down and rest. My legs felt heavy and I was having a hard time breathing. Back then there were no cell phones and I didn’t know anyone anyhow. I did finally make it home in about an hour and I was having my doubts on if I would be able to make it back up the stairs to get into the house. It took me a few minutes, but I made it. I layed down for a while. Mary, Craig Carlocks wife then came home. We were rooming with Craig and Mary. She started getting upset with me because I was laying down. Following the walk into town, I have found I needed rest more and more. She was thinking I was trying to get out of helping clean and cooking and stuff. But I just couldn’t get up. My feet burned and it was like needles going through them. My legs were heavy and it was all I could do to go to the bathroom. About a week later, Chuck took me to Scott and White Hospital in Temple Texas. They wouldn’t see me since we weren’t married and I was a minor. So they sent us home. Things weren’t getting any better. We did move out a week later and got our own place. It was a very tiny trailer that was about 35 feet long and 12 feet wide. That ended up being a good thing. But we moved into that trailer and a week later I was on the floor and unable to get up and walk or call for help. I was there all day long. I couldn’t raise my arms, move my legs or anything. So off to the hospital again. This time we went to a different one. Once we got to the hospital in Killeen, Texas, the Dr seen me and the first question was if I had taken any drugs. I found out this was a common question for people that were young. I told him no and that I didn’t drink or smoke. That wasn’t stuff I was into. Don’t get me wrong, I tried it, but that was about it. But he called a neurologist in to look at me and they immediately put me into the hospital. I was never in the hospital up to this point. They did a spinal tap and a bunch of other tests that freaked me out a bit. They asked me if I have been around anyone sick or if I took the flu shot. I had the flu shot about 2-3 weeks earlier and there was a little girl that was sick around me. But it wasn’t close enough to me. They came back into the room and told me that I had what is called Guillian Barre Syndrome. That alone is a mouthful to say. They tried to explain it to me. All I knew is that I was 17, was in perfect health and now paralyzed from the feet up to my forehead. I couldn’t even blink and people couldn’t understand what I was saying.

• Guillain Barre Syndrome is a rare and severe disease. It occurs after an acute infectious procedure. Guillain Barre Syndrome initially affects the peripheral nervous system. Normally it is acute form of paralysis in lower body area that moves towards upper limb and face. Gradually patient loses all his reflexes and goes through a complete body paralysis. Guillain Barre Syndrome is a life threatening disorder and needs timely treatment and supportive care with intravenous immunoglobulins or plasmapheresis. Unfortunately many people lose their lives without proper and prompt medical treatment. Dysautonomia and Pulmonary complications are the basic reason for death other fatal complications.

The hospital in Killeen transferred me back to Scott and White Hospital in Temple, where they immediately snapped into action. I had to be on a ventilator and was completely paralyzed. I couldn’t even pick up a pencil, raise my hand, blink my eyes. There was nothing. They called my parents for permission to treat since Chuck and I weren’t married. We were planning on it, but wasn’t yet. My parents did give permission. But they didn’t give permission for the Plasmapherisis (Description at End of Post) or the IVIG.  It takes out the unhealthy anitibodies and cleans the blood.  It is a very costly treatment. I think it was a fairly new treatment option back then. But they declined that. My Drs did say that over 80 percent of those who get GBS fully recover. I would like to have a chat with those Drs now and let them know they are wrong. After a long time in the hospital I was released. My husband and I decided to move up the date for getting married. We got married on Oct 30th, 1980. We were going to get married on December 14th so that family could be there. Our thinking though is that we had no insurance and I was going to be spending a lot of time in the hospital. So we pushed it up so I could get covered. Every month I was in the hospital for days or weeks at a time. I ended up also pregnant at the same time. So life was not easy for me or Chuck.

During the day time when I wasn’t in the hospital, I had to go to someones house and my husband had to carry me into Lona’s home and he would lay me down on her sofa and when she woke up, she would assist me in getting dressed, try to eat and it took her and her husband to help me get to the bathroom. It was a good thing that I weighed only 98 pounds at that time.  I still couldn’t walk. It was months before I could stand on my own and write my name. I had to totally relearn it. If I would have had the plasmapheresis at the time, it would have shortened the healing process by months and I wouldn’t have the problems now. Or a good chance I wouldn’t. That little trailer that Chuck and I lived in was a God send. I was able to teach myself and Chuck was able to help me relearn to walk because I could hold onto the walls. the rooms was small and if I thought I was going to fall, there was something I could reach easily. He did all the cooking, cleaning and stuff for close to a year. Right before Jessica was born, I was able to do some things on my own and walk a short distance. I still got tired, but I could do it. I was afraid at the idea of having to take care of her and have the strength at the same time. All of this happened because of a flu shot that I received three weeks prior. Some people carry an antibody and when they get this shot, the pneumonia and maybe some others, it reacts with the antibody.

Guillian Barre Syndrome is an auto-immune disease that attacks the healthy cells in the body. I will provide a couple links for anyone can read more about it. If you remember, I mentioned that about 80% of those who get GBS fully recover. I was not one of those 80% people. I ended up having the CIPD variant of GBS. It is the chronic form and has returned 3 times. Not as bad as the first time though. Thank God for that. It ended up destroying my immune system. I have many medical problems now and am on disability. I also have a second auto immune disease and from my understanding it is because my body fights itself and it is a chain reaction. But I also have Myasthenia Gravis. What I find interesting and I would like to have a pow wow with the Drs that said you fully recover, is that there are alot of people who end up with the CIPD and Myastenia Gravis. I think someone is doing research on that and why it is becoming more common. Now GBS hits about 1 in 300,000 people I believe. Not sure if those numbers changed. I have more problems with the Myasthenia now then the GBS. My Drs told me it is because of both of them, but Myasthenia is causing the havoc with my muscles around my lungs and heart. And those are needed so they pump blood right and to make sure there is enough oxygen of which there isn’t. There is a lot involved. One last thing and the MOST IMPORTANT- When I got GBS, I was not impressed. I couldn’t do what I wanted to do and have living my whole life this way. But I’m grateful that I had this at the same time. You may think I’m nuts, but hear me out. I don’t know where my life would have gone. Most people in my family has had problems with the law or are very unhappy.

Because of me getting this I had to stay clear of drugs, cigarettes, alcohol and such. I have also had to learn to lean on God and trust Him. Without Him, I wouldn’t be who I am now. I have met so many wonderful people because of GBS and Myasthenia. I don’t see it as a curse or anything bad. It isn’t easy, but I know that God is there. Now granted there are times I have to have some one on one time with God and I get upset. I’m human and sometimes I don’t understand. But I know without a doubt that He has always been there for me. I don’t fear what might and could happen. I have peace because of my relationship with Him. I have a daily Bible verse affirmation that I say everyday and that is Psalm 46:1… It says ‘ God is our refuge and strength and ever present in times of trouble. I truly believe this. I believe that everyone has something going on with them. It may not be like what I have, but all have something. And I know that if I didn’t have my faith in Christ, I would never have been able to make it through. Who knows what tomorrow holds. My Dr’s didn’t think I would be around to write this post and all I can say is that only God decides when our time is done, when we have finished the race. Until then, GBS and Myasthenia Gravis or not, I will have to keep going. God has put many wonderful people in my life to help me with my struggles. I noticed this since I was very young.

There was this sweet lady named Mattie Bennett, she taught me to write poetry. Her son Harry Myers was my pastor in Willcox. His family was like my second home and his daughter Diane and I were best friends. I would love to see her again. I have my church family here in St. George. So many of them went out of their way and I thank them. I think of Chris B. Even when things were hard and everything was going crazy, she opened her house and she helped out in so many ways. Pastor Dean and Ruth pushing me and making me go to the ER to get help. Once there was just minutes to spare. I am pretty stubborn, but God knew I needed them at that point. My daughters and brother in law have come in a moments notice. They have family responsibilities and young kids, so I try to find others to come and save the day. God always seems to place the right people at the same time. My church family is my family… For those at church that may be reading this. I do want to thank a few people for going out of their way and helping. Those people would be Shirly Morganti, Sheryl Shaffer, Evelyn Roam, Lisa L (Cant spell her name), Barb Antrim, Sue and JP and so many others. My friend Jenn is there at the drop of a hat. Because of GBS and Guillian Barre Syndrome, I have had to learn to let others help. I’m not good at that and I thank God for that experience. I thank Him for always being there even when I couldn’t see I needed him and others. I guess my point is that no matter how bad things are, God has a plan. We may not always know what it is, but He does. As I leave this topic, I would like to say on the notion of flu shot or not. I don’t take it and I won’t risk taking it. My daughters don’t take it and never will. There are an awful lot of people who have died from complications from the flu shot or they have been paralyzed from it. Everyone has to decide for themselves if the risk is too high or not. I can’t answer that for anyone else but me. I have been dealing with all these medical problems, hospitalizations and so forth ever since that one flu shot back in 1980. It changed my life forever. I guess on a positive note, I didn’t get the flu that year. Links to Sites about GBS and Myasthenia Gravis- If you or someone you know has GBS- CIPD or Myasthenia Gravis. The Guillian Barre Foundation and the Myastenia Gravis Foundation will send free information out to your family and Drs if you request it. And it is free to get on the mailing list. The newsletter I give to my Dr because they always include information for the Drs in case there in an emergency. This has literally saved my life a couple of times.

• What is GBS?
• Guillian Barre Foundation- If you go to the link CIPD which I will provide, that is the variant I have.
• Mayo Clinic
• Facebook Group for those that have GBS/CIPD, caregivers or you are trying to learn more about GBS/CIPD- Everyone in this group has somehow been affected by GBS… Tracy Clevenger has been awesome about putting information out there and connecting people.  Guillian Barre Surviviors
• Myasthenia Gravis Organization
• Myasthenia Gravis Main Page– Get Free Info by mail… They have a good newsletter you can send to friends. I actually have them mail my Dr’s one…

One last thing. Not all people get GBS from a shot. They can get it from a virus and other ways. If you are sick, please cover your mouth when you sneeze. Please wash your hands and stay home if you are sick. A person like me who has these problems can end up in ICU and completely paralyzed and worst case scenario die from what may seem like a harmless cold or flu. It can kill someone or make them very sick because people like me can’t fight the flu like everyone else and our immune systems can’t handle it. So be respectful and cover your mouth and wash hands. Stay home if you are sick. You don’t know who’s life you could save. I was in the hospital for 6 weeks, and 3 of those was in ICU because someone had the flu and didn’t think about not coming over to visit.

Terms:

• Guillain-Barre syndrome is a serious disorder that occurs when the body’s defense (immune) system mistakenly attacks part of the nervous system. This leads to nerve inflammation that causes muscle weakness and other symptoms.
• Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.
• Plasmapheresis is a process in which  the fluid part of the blood, called plasma, is removed from blood cells by a device known as a cell separator. The separator works either by passing the blood at high speed to separate the cells from the fluid or by passing the blood through a membrane with pores so small that only the fluid part of the blood can pass through. The cells are returned to the person undergoing treatment, while the plasma, which contains the antibodies.
• What is IVIG? IVIG stands for intravenous immune globulin; it is a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein. IVIG is used to treat disorders of the immune system or to boost immune response to serious illness, and to treat immuno-suppressed recipients of bone marrow transplants.¹Antibodies are responsible for defending our bodies from pathogens, such as viruses and bacteria.
• Myasthenia gravis is a chronic autoimmune neuromuscular disease characterized by varying degrees of weakness of the skeletal (voluntary) muscles of the body. The name myasthenia gravis, which is Latin and Greek in origin, literally means “grave muscle weakness.”