Every now and then I will go into medical things or my medical issues. With this being May it also happens to be Guillian Barre Syndrome Awareness Month. I have the CIPD variant of Guillian Barre Syndrome. I’m not going to go into much of the medical terms and such, because it is kinda hard to understand and me to describe.
What is Guillian Barre Syndrome ?
Guillain Barre Syndrome (GBS) is a disorder characterized by progressive symmetrical paralysis and loss of reflexes, usually beginning in the legs. The paralysis characteristically involves more than one limb (most commonly the legs), is progressive, and is usually proceeds from the end of an extremity toward the torso. Areflexia (loss of reflexes) or hyporeflexia (diminution of reflexes) may occur in the arms and legs.
What is CIPD?
Chronic Inflammatory Demyelinating Polyradiculoneuropathy is a immune-mediated inflammatory disorder of the peripheral nervous system. It is believed that the condition is caused by immune cells attacking the exterior lining of nerve cells.
There are two types of CIDP: chronic progressive and relapsing. The chronic type is one that slowly worsens in time
When I was first diagnosed with GBS, I was 17 years old and living in Texas. I was living with my husband at the time. He was actually my boyfriend at that time.
When I first came down with GBS, it was hard to diagnose. There were many other illnesses and diseases that could mimic GBS. Here are a few of the many and probably hundreds of similar diseases;
- Multiple Sclerosis
- Lyme Disease
- Drug Use
- Bells Palsy
- Hodgkins Disease
The first time I came down with this was in 1980. I was very healthy at the time. I would have been in my junior year in high school. Running was my favorite thing to do at the time. Cross Country, Track and Basketball was things I enjoyed participating in. I loved to just get out there and run. When I did that, everything else was behind me and I just needed to concentrate on the path ahead of me. For me being able to run and explore is what I miss the most.
When I first noticed there was a problem was when Chuck and I went to go see a movie. I was exhausted when we were at the movies. My thoughts was that I must have over exerted myself or was more tired than I thought I was. Over the next few days, my legs felt heavy and numb. Simple things like getting up or taking a shower was almost impossible. Within 3 weeks I was completely paralyzed all the way to my forehead.
Chuck and I went to a number of emergency rooms and none of them would treat me and they thought I was on drugs. They tested me each time and there was never any drugs. If I had the strength I would have popped them upside the head. They sent me on my way and the day came when I couldn’t get up at all. Chuck came home from work. He was in the Army at Fort Hood. He had to lift me up and we went to a different ER. That was when they figured there was more going on. They did admit me and did a spinal tap and other tests. The levels of proteins and the color of my spinal fluid was almost a yellow and they knew what it was at that time, considering it is suppose to be clear.
Chuck and I were a bit worried on how we were going to pay for this. Chuck and I wasn’t married at the time. We were talking about it and planned on getting married in December, but we pushed it ahead so I can get treated at the Army Hospital. I would end up spending months in the hospital. I was overjoyed when I could open and close my eyes without them having to tape them shut since I couldn’t more any muscles on my face or body. I couldn’t lift a pencil. I should add that since I was a minor at the time, the Shriners ended up picking up the bill for everything before we got married. We didn’t know about it till we got the bill in the mail. We were very grateful when we seen ‘Paid in Full”
Trying to learn how to walk, open and close my eyes, write and do those things we take for granted was long and frustrating. My Dr’s reassured me that once my muscles start coming back and the mylen sheaths on the nerves repair themselves I would have no more problems. They assured me that GBS never comes back. I found out that was far from the truth. I had 3 re occurrences. Granted the second and third time wasn’t as bad as the first.
Back in 97 or 98, we found out that mine did come back. And since I wasn’t give a treatment called Plasma Pherisis and IVIG, my nerves didn’t repair themselves. When they do nerve tests, EMG’s and other neurological tests, they say I shouldn’t even be walking. I should be in a wheel chair.
Some may wonder how I got GBS/IVIG and it all started with a flu shot. The flu shot reacted with antibodies that I carry and it wrecked havoc on my system. My body is basically fighting itself. It is seeing the good cells as bad and they are eradicating them.
Because my body fights itself, it has gone through a whole chain reaction when it comes to my health. About 8-10 years ago. Maybe even longer. I was diagnoses with Myasthenia Gravis. That’s a form of Muscular Dystrophy. I have never heard of this disease either. But it causes muscle weakness, breathing problems, and a whole host of other things. It took a long time to figure out what is what, because some of the symptoms are the same.
Today or should I say my life now is far from what I would think is a normal life. But at-least I am here to share with you all what GBS is and what Myasthenia Gravis is. Guillian Barre Syndrome can also start by getting the flu, cold or other virus’s. For someone that has GBS, a simple cold could kill them or land them in the hospital for a long time and completely paralyzed. What might last for just a few days or weeks to the one that is sick, could be life threatening to someone like me. I have ended up in ICU because a child had strep throat and decided to not cover their mouths when they are coughing or sneezing.
There are so many medical things that I have because of the GBS and Myasthenia. I have malignant hypertension (240/120) for my blood pressure. It is this way because the muscles and the signals in my brain doesn’t talk to each other. I have Cheyenne Stokes Breathing for the same reason. My brain forgets to tell my lungs to breath. Which is hard to get them to do breathing… I There is also the demyelinating that is going on in the brain. That is why I forget a lot of things and nothing they can really do about it.There is also the nueropothy and numbness that most people with GBS will have and most still do. With me, the more I exercise the weaker my muscles get. A crisis is always around the corner. There is a whole list of things going on with me that all come from getting GBS and my body fighting itself.
My Dr’s and nurses are surprised I am still here. Actually I shouldn’t be here still. I can’t answer that because I can only say that it is a “God Thing”… I trust that God has a purpose for what I am going through. I don’t think He gave me anything. God loves all His children. He does allow things to happen and for me at-least I use those things as a way to help others. I can’t deny that there are days I feel like Job from the Bible. And I have to keep in mind that Job was rewarded and God never left him.
Then I have some that ask me how I can’t be mad at God. They have the thought that since I am a Christian and believer in God that I would be upset with Him because these things shouldn’t happen to Christians. God should protect us from all the bad. Well, things don’t work that way. Bad things happen to all people. I have had moments though where I have to have a discussion with Him and ask him to give me a breather for a bit.
My favorite Bible Verse and the one that gives me the most hope is, “God is our refuge and strength and ever present in times of trouble. Psalms 46:1″. When I read this and recite it, I know without a doubt that God is always with me. Even on my worse days and I want to throw my hands in the air, I know he is there.
I think about all the hundreds and thousands of children dying from cancer. Their life just began and they are going to be returning to God. I don’t understand why these things have to happen, but they do. And it isn’t putting them through it. But He is there.
In closing and i know you all must be tired of this long winded post. I just want to say that I wouldn’t change anything. Because of my illness and all of my experiences, I get a chance to talk to others and tell them that it is OK. I get to meet people I never would have been able too. Also because of my allergies and medical problems, I could never get involved in partying or drinking. I enjoy sharing my experience with those who have GBS or Myasthenia.
The group I belong to on Facebook has many that are just getting diagnosed and they feel like things are hopeless. And I am here to say nothing is hopeless if you have God and you are breathing. Just take one step at a time and reply on Christ alone. He will pull ya through anything.
If you or someone you knows has GBS or other things I mentioned in this post. I am part of a couple of groups on Facebook that have others that have or have GBS. You will find GBS and other auto immune diseases affects everyone differently. Just because I had the problems I have and the residuals, doesn’t mean that everyone will have them. Anyone is free to comment, share their experience or ask questions. I have no problem sharing my experience and I don’t very often because of how complicated it is and not many would understand even if they are told. These groups are also great for the caregivers and those mourning the loss of a loved one due to GBS.
If you want to read more about a few of the things I mentioned, I did provide the links below;
2 thoughts on “Guillian Barre Awarness Month- My Experience with GBS”
I am so proud of my sister she has over come a lot and hardly ever complains she makes the best of what she can do. Sandi I Love you and you my dear sister are an inspiration to many and that includes me you are my HERO.
I doesn’t do much good to complain. Now when my knee hurts I do, lol And I have my grumpy moments as Chuck would agree 🙂