Guillian Barre Syndrome Q and A

This blog may be a little long. I ended up getting a number of questions for me to answer. I did combine some questions since some of them were similar.  Thank you for all of the questions and I hope my answers will help you understand what GBS/CIPD. I will follow this up with comments from my husband and daughters. It will be about what they went though with me being sick all the time.

About a month ago, I sent out emails, posts on Facebook and on my Instagram page that the month of May is Guillian Barre Awareness Month. I have been doing GBS Awareness posts for a number of years and I will include links to those blogs so anyone can reference those for more information.  I have included links also for website called Guillian Barre Syndrome Foundation. There is a lot of information and videos that describes what GBS is.  As with many things, I want to make a disclaimer that what is normal for one person may not be for other people.

I have the CIPD variant of Guillian Barre Syndrome, which is the chronic form. I’ve had it a number of times, when people normally get’s GBS 1 time and the degree of disability varies from person to person.  I’m trying to stay away from information overload, so I hope I can make it easy to understand what GBS/CIPD is. I have included links to the information that I’m sharing. Just put your mouse over the link and it will take you to the page for the information.

Here is a link to a video on Youtube that kind of shows you what I went through. This is a short video and will show you what I went through. When I first came down with it, that was before video taping and sharing my story. Please what Miranda’s Journey which is pretty close to my own experience. The only difference I had this 4 times and I don’t know if she has or not. but, it’s easier to expain what I went through by showing this video.

Guillain-Barré Syndrome – Miranda’s Journey

Last years blog posts was more of a personal type of posts and was one of the hardest times when it came to my GBS experience. These are links to last years blog posts. There are also a number of other blogs that

My experience with Guillian Barre Q&A’s

Q. What is Guillian Barre Syndrome? 

A. (Guillian Barre Foundation )-  Instead of me using my way of describing it, I figured it is best to give the accurate medical lingo to describe what it is.

Guillain-Barré (Ghee-yan Bah-ray) Syndrome is an inflammatory disorder of the peripheral nerves outside the brain and spinal cord.

It’s also called:

  • Acute Inflammatory Demyelinating Polyneuropathy
  • Landry’s Ascending Paralysis

GBS is characterized by the rapid onset of numbness, weakness, and often paralysis of the legs, arms, breathing muscles, and face. Paralysis is ascending, meaning that it travels up the limbs from fingers and toes towards the torso. Loss of reflexes, such as the knee jerk, are usually found.

Q. You said that you have the CIPD variant of Guillian Barre Syndrome. What does that mean? 

A. Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)?  The easiest way for me to describe it is that instead of Guillian Barre Syndrome going away and left without a number of symptoms that continues being a problem. This is what  the National Institute of Neurological  Disorders and Stroke(NINDS) website says. 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.

Q. How did you get GBS? 

A. I ended up getting Guillian Barre Syndrome from the flu shot. From what my Dr said, I carry a certain antibody that reacts to viruses such as the flu. From what the Center for Disease Control and Protection (CDC) website says that there are some people who have gotten GBS after having the flu or other infections such as pneumonia, strep throat (which is how I ended up paralyzed the second time. I ended up with GBS from the flu shot, 3 weeks after getting the injection.

If you have gotten the flu shot, you may have noticed on the bottom of the paper that you have filled out you will see this listed at the bottom about who should NOT get the flu shot. This information I got on the CDC website.

People who should talk to their doctor before getting the flu shot:

If you have one of the following conditions, talk with your healthcare provider.  He or she can help decide whether vaccination is right for you, and select the best vaccine for your situation:

  • If you have an allergy to eggs or any of the ingredients in the vaccine. Talk to your doctor about your allergy. See Special Considerations Regarding Egg Allergy for more information about egg allergies and flu vaccine.
  • If you ever had Guillain-Barré Syndrome (a severe paralyzing illness, also called GBS). Some people with a history of GBS should not get this vaccine. Talk to your doctor about your GBS history.
  • If you are not feeling well, talk to your doctor about your symptoms.

Q. How did you know that you had GBS and what were your symptoms? 

A. That is a great question. 

I was a very athletic person. I ran on the average -10 miles a day. I was only 17 when this was all happening.  I was tired all the time. I normally woke up by 8 AM and then I would go out for a run. I enjoyed sports and played on a girls softball team, tennis, volleyball, track and field and cross country. Since I left home and moved in with my then boyfriend and husband now, I only did running and biking.

One day I went into Nolanville, Texas and it was less then a 2 mile bike ride. I was heading home and my legs felt heavy. I couldn’t get the strength to walk. I needed to walk across the street where my bike was. But, I had a horrible time doing that. I did manage it after an hour. I came into our house and it was all I could do to go up the three steps to our house. Our room mate said that I took so long because I was trying to get out of helping clean. But, I went to bed and I was just exhausted.

Over a 2 week time span, I went from very athletic to not being able to walk, lift things and anything that took an effort. I lost strength that started in my feet and went up over those 2 weeks. I knew something was wrong, so I went to the hospital, but the Dr’s thought I was on drugs. But, when I got diagnosed finally, I was completely paralyzed up to my forehead and on life support.

Q. How did I know I had GBS? 

spinaltap

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 A . I finally had a Dr believe me and he ordered a spinal tap(lumbar puncture). This is a procedure in which fluid surrounding the spinal cord (called the cerebrospinal fluid or CSF) is withdrawn through a needle and examined in a lab.

They were testing the fluid because they suspected it already. They knew that it was GBS because the fluid was a darker yellowish/straw color which they said it was that way because of the protein in the fluid. Normally the spinal fluid is clear.My fluid was close to the last on of the 5 vials. It should have been clear.

Q. Is it contagious? If so, is it hereditary? I know you have daughters and grandkids, are they at risk.

A.  This is a question that I get quite a bit.  This is what all of the informational websites says; The exact cause of GBS is not known. Researchers don’t know why it strikes some people and not others. It is not contagious or inherited. … In GuillainBarré syndrome, however, the immune system mistakenly attacks the healthy nerves.

I have 2 daughters and 7 grand children. Because of all of my medical problems, I was only able to get pregnant once. We did adopt Rebechia, which would mean there isn’t anything I would have handed down to her and her children. With my daughter Jessica and her two children, they don’t take the flu or the pneumonia immunization. My  health problems have caused them to stress over the possibility of them getting what I had.  Dr’s always say that it isn’t hereditary and not contagious. I have no doubt that it isn’t contagious since it is as auto-immune disease. They also say it isn’t hereditary, but I have seen it happen when it comes to families. They don’t know for sure.

I have had this 4 times and it’s always because I have gotten sick or I was around someone sick. So, we do our best to prevent getting around anyone sick when possible since I have almost died a few times over just getting sick. Since there is so many unknowns. We don’t know about hereditary things.

Q. My uncle had GBS about 15 years ago. He is in a wheelchair now. The Dr’s told him he would never get it again. I’ve read on your blog that you had I believe that you have had it around 3 times and you still have some residuals. Will my uncle get this again?

A. I don’t know if I can answer that since everyone’s experience is different.  All of the Dr’s I have seen and places like the GBS/CIPD Foundation, CDC and others have said this;

GBS can range from a very mild case with brief weakness to nearly devastating paralysis, leaving the person unable to breathe independently. Fortunately, most people eventually recover from even the most severe cases of GBS.  After recovery, some people will continue to have some degree of weakness. While I have had it a number of times and have had a variety of symptoms, that isn’t true for everyone.

Guillain-Barré syndrome can affect anyone. It can strike at any age (although it is more frequent in adults and older people) and both sexes are equally prone to the disorder. GBS is estimated to affect about one person in 100,000 each year.

Q. Are there ways to prevent getting Guillian Barre Syndrome?

A. Not that I know of. I just know that I do my best to not be around those that are sick since I have had it. I don’t know if there is even a test to see if you have the potential of getting it. I heard they have an blood test for it, but it isn’t a normal test and I haven’t had any of my Dr’s and Neurologists suggesting it.

Q. I had a family member that died from Guillian Barre Syndrome unexpectedly.  We were told that she would be OK once it starts reversing. I belong to an online support group and what they are describing, it doesn’t fit with what my family members doctor said. Have you come close to dying? Do you have a fear of dying?

A. I’m sorry to hear about the loss of your family member. Since everyone is different, it has to be difficult to lose someone you love when you were told they would be OK. I was also told that once my muscles and the nerves began working, I would never have any issues from it. When it comes to how I deal with my diagnosis and death, I’s not afraid of death. That’s because of my faith. I do worry about those I will leave behind. If it wasn’t for my faith, I would be terrified.

psalms461a
God has never let me down. He promised me that He is my strength and my refuge in times of trouble. I have never forgotten that and I need Him ever single day and moment in my life.

Q. I have known you for a long time and I have found you inspirational because of how hard you have and are fighting. How do you stay positive when so much has happened?

A.  I for sure have my moments. I have those times when I just want to throw in the towel. It’s pretty much where I get to the point of , “sick of being sick” type of mentality. I just don’t post a lot of that stuff. But, a number of years ago, I had to change my negative thinking because I was having more bad and angry days. Thankfully God helps me through those moments.

Q. You said that you try to only discuss your experience with having Guillian Barre Syndrome at this time of the year, why is that?

A. I think that is a good question. Basically I don’t like to talk a lot about it because I don’t want people to say, “that’s the person who has Guillian barre Syndrome” or “I feel bad for everything she is going through”. That’s because I know some people have medical problems and that’s all they talk about. One of the ladies that I was friends with that became her identity. My illness isn’t who I am. My name isn’t Sandie Guillian Barre Syndrome. I’m simply Sandie Divan. When this lady only talk about her medical things, it became apparent that she was using her medical issues as a tool to get people to donate to her and to do things for her that they normally wouldn’t do. They did it because they felt sorry for her. While I have GBS/CIPD and a number of other medical problems because of it, that isn’t who I am.

55729577_324895108211615_4302484611290403372_n
This isn’t a picture of me, but this is what it is like when I was going through my stuff.

Q. I had Guillian Barre Syndrome 5 years ago and it’s been very difficult.  I was intubated and then had a tracheotomy to help me breath. I’m still in a wheelchair. I wish I would have died and not be a burden on my parents. How does your family handle your medical issues?

A. For me the hardest thing was being intubated and not being able to breath and not being able to tell anyone what I was thinking and feeling. I couldn’t move or do anything. I totally understand that. that is something I still have problems with. I have made it a point to have my medical directives drawn up by an attorney so I could make sure to never be put in that position. Last year, my Dr’s didn’t listen. You can click on the links I shared at the top of the page.

I don’t have many fears, but, I understand how difficult that would have been for you. If you need to talk you can send me an email and I will contact you and I can give you some information about one of the  group I go to  Guillian Barre Syndrome Surviors Group on Facebook  . 

 

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