Sunday, May 22, 2011

Guillian Barre Awareness Month

Normally I try to stay away from my medical things...But I will post something on Guillian Barre Syndrome since May is GBS Awareness Month... This is only a brief snippet of things... I hope you get the idea on how much of a pain GBS is... Also if there are others that are reading about my adventures with GBS... You are welcome to comment and share yours too...

My GBS/CIPD Experience:

I was 17 when I first came down with GBS... I was normally very active and on the average would run around 9-10 miles a day... When I first noticed that something was wrong I was living with my husband Chuck over 30 yrs ago... I was getting more and more tired over simple things... The weakness started with my feet and within a few weeks I was completely paralyzed... I wasn't even able to close my eyes or move any of my facial muscles... I went to a few Dr's while this was going on and finally a Dr noticed that it was something serious... They all were wondering if I was on some kind of drugs or something... I would tell them no, and of course they never believed me so they would do all the tests... But this one Dr ordered a spinal tap... What a horrible test that was and that's when it showed that I have Guillian Barre Syndrome (GBS)... I was in the hospital in ICU and paralyzed for almost a year... I have had some serious recurrences and residual effects...

From what I am gathering I got it one of two ways... Either from the flu shot or from someone that had the strep throat virus... Either way, it was not a nice thing... My husband and I decided to get married earlier since I couldn't walk and he was in the Army stationed at Fort Hood Texas... We were thinking atleast that way the medical bills would be covered... We did find out though that all the bills up to that point was covered by the Shriners... So that was pretty awesome...

Chuck was pretty good about it and most guys would run from a situation where his then girlfriend couldn't walk and he had to carry me all over... I couldn't even lift a pencil when it came time for me to sign for us to get married... If I remember right, even the judge looked at me and asked me if I was sure... I guess it must have been right since we are still married... I guess it is good to break a guy in when it's at the worst or so it may seem... Thankfully for him I was down to 95 pounds by that time... One thing I did forget to add, not only did I have GBS but I was also pregnant with my daughter Jessica... But we are still married even though I have so many problems from the GBS and each day is uncertain... I guess God can use even bad choices to make things right...

I found out later on that I actually had the CIPD form of Guillian Barre Syndrome... I have had many medical situations come up because of this... I won't go into all of them since it is way too complicated and more of a mess of things... That would be like opening up a can of worms...

I never get the flu shot each year... If you notice on the forms for the flu shot that if you are allergic to eggs or ever had GBS then don't take the shot... I am all for not taking it since I can see personally what happens with this... I just happened to carry a certain antibody that is not a very nice one... But whatever virus I got in contact with reacted with that antibody... I try to stay away from those who are sick... A simple cold or flu is enough to put me in the hospital... I can see why it is important for people to cover their mouths when they cough... You never know how your cough or sneeze will affect someone else...

CIPD: From the GBS/CIPD Website

What is Guillain-Barré Syndrome (GBS)?

Guillain-Barré (Ghee-yan Bah-ray) Syndrome, also called acute inflammatory demyelinating polyneuropathy and Landry's ascending paralysis, is an inflammatory disorder of the peripheral nerves those outside the brain and spinal cord. It is characterized by the rapid onset of weakness and, often, paralysis of the legs, arms, breathing muscles and face. GBS is the most common cause of rapidly acquired paralysis in the United States today, affecting one to two people in every 100,000.

The disorder came to public attention briefly when it struck a number of people who received the 1976 Swine Flu vaccine. It continues to claim thousands of new victims each year, striking any person, at any age, regardless of gender or ethnic background.

What Causes GBS?


The cause is not known. Perhaps 50% of cases occur shortly after a microbial (viral or bacterial) infection such as a sore throat or diarrhea. Some theories suggest an autoimmune mechanism, in which the patients defense system of antibodies and white blood cells are triggered into damaging the nerve covering or insulation, leading to weakness and abnormal sensation.

CIDP (chronic inflammatory demyelinating polyneuropathy) is a rare disorder of the peripheral nerves characterized by gradually increasing weakness of the legs and, to a lesser extent, the arms. It is caused by damage to the covering of the nerves, called myelin. It can start at any age and in both genders. Weakness occurs over two or more months. Characteristics of CIDP that help support its diagnosis are described below.

Current theory holds that the body's immune system which normally protects it, perceives myelin as foreign and attacks it. Just what starts this process is not clear. Some patients are found to have abnormal proteins in their blood, and these may facilitate damage.

3 comments:

Community said...

Wow. You have been through a lot.

Sandie said...

Hi there... I don't think any more than anyone else has been through... I guess we all just have our things and it is what it is...

Anonymous said...

Thanks for posting information on GBS. My very good friend Michelle had the same varient of GBS that you have. She passed away because of all the complications. I praise God that she is out of pain and in a better place. I miss her a lot, she touched everyones life that she came into contact with. Too bad more people aren't willing to share more about this horrible and debilitating disease. One thing you wrote about caught my attention. Michelle would stand firm on people covering their mouths and washing hands. This simple act can save someones life. She said there is no test to see if anyone carries this antibody and it would be great if people would cover and wash hands. She said that something as simple as that could save a life, her life. RIP Michelle, I miss you!