I have have had Guillian-barre syndrome twice, exactly two years apart, the first time spending 3 months in ICU needing a tracheotomy, Photos and an explanation on of exactly what GBS in notes AMA!

How badly did you freak out on 9/9/2011?

Yeah it was on my mind that's for sure! I made sure I was super healthy as I could be, stress free, and thinking positive :-)

2009 was worse

One of my close friends at University had GBS for around six months. Horrific thing to have, thoughts are definitely with you for going through it twice.

I have two questions:

1. What was it like awakening from a coma?

2. How did you keep yourself sane through hospital the second time having already gone through it?

Waking up was very confusing. Before I was induced into a coma the medical team still had not descovered what I had. so finding out was a shock. I was still tired when u woke up though :-) very drowsy.

I had a lot of visitors and music really helped me relax, keeping a positive out look made it so much easier, I was 100% positive I could get better and knew what I was dealing with so in a way in was easier.

TWICE? That's just awful. I'm sorry you had to suffer through that.

Some people insist GBS is related to the flu shot; researchers seem to disagree. What's your take?

Thank you it was a huge learning experience for someone of the age I was. I believe GBS can be caused by and any virus or infection so having the flu shot puts you at risk of contracting GBS but so does getting the flu for even a common cold. I don't think GBS Is directly related to the flu shot though but it can be triggered

Wow, I'm sorry that you had to experience such a horrible illness twice. Thanks for doing this. My question is did you have any infections or perhaps the influenza vaccine prior to being diagnosed with GBS?

Thanks you so much, I do not feel sorry, being in hospital so long made me realise there was always someone worse off (with conditions that have no chance of improvement)

I had not had any flu shots or even a flu or any type of illness prior to getting GBS. I may have had a virus I didn't know about. I am also a strong believer of a healthy mind means a healthy body and I was under a lot of stress both times prior to getting GBS.

I now get no vaccinations what so ever.

:-)

Thanks you so much, I do not feel sorry, being in hospital so long made me realise there was always someone worse off (with conditions that have no chance of improvement)

I had not had any flu shots or even a flu or any type of illness prior to getting GBS. I may have had a virus I didn't know about. I am also a strong believer of a healthy mind means a healthy body and I was under a lot of stress both times prior to getting GBS.

I now get no vaccinations what so ever.

:-)

Why do you now not get vaccinations?

They can trigger GBS but are not the main cause. I was going to get the ovarian cancer vaccination but even that has a possible side effect of Gillian barre. It is not worth the risk for me although I do have to weigh up the risks for every vaccination i am suppose to get.

I don't want to risk getting Guillian barre again

• did you lose all feeling in legs?
• any permanent side effects?
• would you rather have one foot paralyzed the rest of your life or GBS for 2 months out of every year for the rest of your life?

Yes I lost all feeling in my whole body not just my legs, what happens is your immune system attacks the coating of your nerves therefore I had no nerve activity or feeling.

I do have ever lasting side effects. My shoulder where it all started constantly aches, my scapular muscles don't receive messages from my nerves and more which makes my shoulder 'wing', I had complete face drop on the left side which I fixed as much as possible with a tens machine, I get sooooo lethargic sometimes, and I have this strange thing with my voice where it just stops working. Compared to what I was I am extremely! Happy with my recovery.

I choose just one foot paralysed lol GBS takes a long time to recover I'd learn to deal with the foot lol

Thanks for the questions :-)

Do the doctors have any idea what brought it on? I know there is a vague and extremely rare correlation between receiving a large quantity of vaccines in a relatively short time period.

I can't imagine going through it twice!

I'm interested to see how this occurs, would you have a source for the correlation between GBS and vaccine use?

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Thank you for the info and your opinions, it's so helpful. I agree in terms of vaccine to on extent but it all depends on the specific vaccine when weighing up the risks :-)

The doctors had/have no idea why I got it, and twice.

Yea I was pretty pissed off the second time, I knew straight away what was going on.

I had GBS when I was 14, and I think it's really interesting how different our symptoms were. Mine started as a feeling of my feet and legs being asleep, and was caught before it progressed above the waist. I have a couple of questions:

1) Besides the coma and tracheotomy, how was your GBS treated? Did you have plasmapheresis or gamma globulin?

2) I know that people who have had GBS once have an increased risk of getting it again; do you know if your risk is increased beyond that?

I'm glad you're doing well!

Thank you I hope u have made a full recovery and are doing well as we'll :-)

The only treatment was a few doses of IVimmunoglobulins. I was also givin gabapentin for nerve regeneration but who knows if that works. I had a massive list of medication and pain killers but that is all I had to try and control or fix the syndrome.

The statistics I have read is you have a 2% chance or getting it again after already having it. I believe I am always at risk of getting it more then the adverage person and will be quite possible get it again but not as bad. If I do I'll know what I'm dealing with and how.

There are many different cousins of GBS although I am not diagnosed with a specific GBS maybe I have another form causing me to get it twice.

What were your symptoms

My first symptoms were extreme shoulder and back pain also sciatica, which progressed to numbness and tingling in my fingers and toes slowly moving towards the core of my body until I was completely paralysed. The whole time my whole body ached until I could not feel any sensations.

Was this progression over hours, days, weeks?

It was days

Maybe a week

were you "awake" during the coma?

No not at all, I don't remember anything about my time in a coma

:-).

I had it when I was very young and don't remember probably 1 or 2, what was it like having it as an adult?

It was a learning experience that's for sure. It was mostly annoying lol and very scary for my family and friends. I was only 17 the first time I got it, luckily I had just finished high school. I learnt a lot of patience and empathy for other people around me who we're suffering.

I think it would be preferred to get it at a younger age, the chances of recovery are much higher.

I hope you get better and everything works out for you. I could not imagine being in a coma. I hope you never have to suffer through this again.

Thank you so much :-) its just some thing you have to take as it comes. Thanks again. I am much better and more then happy and grateful with how far I have come

I don't understand. What was their reason for putting you into a chemically-induced coma?

So my body could only focus on getting better, it would have been a very horrible couple of weeks if I was to be awake..... Even nerves in my eyes were effected so I could not see properly when I woke up.

Here, I would've just been left to suffer because my insurance would not cover it.

It's horrible, it makes me sick, and it isn't even me suffering. I spent 6 weeks in America last year and I loved its so so so much it is such a beautiful country with F*ing awesome people ( as well as douch bags, just like here and everywhere) and the most beautiful land scape, truly amazing i can wait to come back but.....I cannot believe how much it opened my mind even more to how really fucked the government is. The health system is appalling or should i say non existent? Plus other things I could go into but it would take all night :-) I feel for you and hope you never get screwed over by your health system.

I know I am SO lucky I was not born in america, I'd be dead. I feel so sorry for you guys for your health system. It's fucked

You seem like a very brave person. Keep up the fight

Thank you so much. :-)

My brother had it. It ruined his life.

That's horrible, I'm sorry to hear that. do you feel comfortable going into more detail. doctors say after 2 years the recovery period starts, that is as much as you are going to improve. I strongly disagree and am living proof.

It happened to him when he was in middle school. He was paralyzed from the neck down and one day away from a tracheostomy when he finally was diagnosed properly and given plasma pheresis. It took several years of physical/occupational therapy to regain most of walking/functioning, though he still needs a cane and still cannot write well. His inability to write + the time lost in education kinda derailed him. Trying to balance therapy and schooling all with my bitch mother didn't really work, so he got a GED. He got into a decent school (top 40), but with shitty financial aid. Long story short, while he got good grades, there were issues with the majors offered. The school promised a certain major would be reinstated that never happened. Two years in he quit because he realized he was going to get deep in debt without the major he wanted and with shitty job prospects. This sounds horrible like he's a dropout or whatever, but I honestly think he made the right choice; they deceived him. He woulda easily been a top tier student with a scholarship at a top 20 school like myself had he never gotten sick.

I am sorry to hear that, . I wish all the best for your brother in the future.

Which flavor of Tim-Tams do you like the most? Do you like choc-lamingtons? Cheers from Mexico mate, you are a pretty strong person I must say :)

I love all Tim tams but the caramel ones are probably my favourite followed by double choc, the best way to eat a Tim tam is is biting off each end then using it like a straw to suck hot chocolate or coffee through OMG! And yes I also like choc laminating too! What's filling I a taco? And do you prefer hard or soft shell?

Thanks you so much :-) what's the saying I have heard and said a thousand times....."what doesn't kill you only makes you stronger"

I love the exact same ones as you haha, never tried them with coffee thought :( but I will! Also here in Mexico there aren't any hard shells, Im not trying to be that guy but hard shell tacos aren't Mexican but I've had some in the past and I like them pretty much too

Cool that's interesting, I like soft better anyway. I'd love to come to Mexico sometime.

I thought Tim tams were only in aus? Maybe they just made here :-)

Tim Tams are oz's I lived in Brisbane for 7 months like 3 or 4 years ago, in Cleveland

I live in brisbane, wat did u think of it?

If you someday wanna come well "mi casa es tu casa"

:-) same too u

Me and Jimmy, sitting in a bar in Djibouti getting stupid onJohnny Walker red...

"Hey Connman, I can't feel my feet!"

"Yeah, good hootch, hey Jimmy?"

Later he puts a cigarette out on his finger and that was my intro to GBS. We medevaced to Singapore and Jimmy recovered after a 3 year uphill battle only to perish in an aircraft accident soon after his full recovery.

Wholly shit . I'm so sorry to hear that. X x x condolences that's crazy

I just read the wiki article, and I'm still kind of confused about the disease. As someone who has had it twice, could you please explain it to me as you would a child?

No worries it's very complex....what happened is you get a virus or a minor surgery (Anything that makes your immune system work), once your immune system fights the "infection" it doesn't stop. it continues to eat the myelon sheth of your nerves (myelon sheath is the coating of your nerves the same as an electrical cord has a coating). starting on outer limbs (legs and arms) moving in towards my body till I was completely paralysed, then they grow back, so you get the feelings in your toes and fingers back first. Every case is deferent. Mine was very server. In the mean time your muscles waste away (it doesn't take long at all). I had not one working muscle which took a lot of rehabilitation. Ask me any more questions if this doesn't explain.

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I still have left over side effects that maybe one day will get better (hopefully not worse), sometimes my voice jus wont work properly, I'm saying the words but they don't come out, the optic nerve in my left eye hasn't got completely better and my face is still a tiny bit droopy on the left side, and I also have winged shoulders, some of my shoulder muscles are non existent, or just not working a all. I get really tired sometimes, just so lethargic. General pins and needles as well sometime. These are all things I can live with.....and it hurts when I get a tattoo!

I got it in 1979 as an 18 year old.....no treatment back then .....Gold Coast and Brizvegas hospitals. ...full recovery took about 1 year.

Getting it twice would really suck ;)

Yea it was pretty lame, but there is always someone else who is worse! What did u think of the hospital system back then? Where you in the royal brisbane? I'm also from brisbane.

My friend had this. Wrote a book. http://hollygerlach.com/

"Gerlach was admitted to the hospital, where she spent two and a half months in intensive care on a ventilator. She couldn’t move, she couldn’t speak, and worst of all, she couldn’t hold her newborn daughter. She felt like her life was over as she couldn’t be the mother that she had always wanted to be."

So sorry for your trials... it is such a debilitating disease. :(

Thank you for this :-) I have often wondered about GBS and pregnancy.

I had GBS when I was about the same age as you the first time - no breathing involvement, just limbs and I was pretty much back to normal in a year. My doctors said on my last checkup "at least now you can relax and know that you won't get it again. If you get it again it means it's something different like CIDP". Not being funny, but are they sure it was GBS both times?

If so, I mean, wow. It's a rare enough condition to get once anyway (though I bet you've come across plenty of people since who know someone who had it, right? I know I did :) ) To get it twice is crazily bad luck. Hope you're fine for the future!

Yes I have thought and looked into a lot if I might have CIDP. I'm am not sure it was GBS but this is what I have always been diagnosed with. I can't seem to find a doctor with enough knowledge of the disease or cares enough to look into, this is actually part of the reason I posted this AMA to learn more and hear other experiences. I have heard it more since having it, I made a few hospital visits to people suffering too give them hope after I had recovered, and I work in a hospital pathology lab and have seen 2 cases come into my lab in the last 3 and a half years.

I wish I knew the answers to this questions :-)

Were the doctors able to tell you the cause of GBS? I too suffered from GBS two years apart back in 2002, back then the doctor's had no idea what it was or the cause, has anything changed now? (Also in oz btw :P)

Nope they just say it may have been a virus or minor surgery....which I didn't have anything I was perfectly healthy and had not had minor surgery. some reasons i think may have caused it....I was under a lot of stress and I wasn't dealing my problems with both times and another possibility might be that I went to the Brisbane Ekka both years and may have picked up some dirty virus I didn't know I had or have symptoms for. These are both just my guesses so I honestly don't know. I have never been to the Ekka again and have learnt to deal with my problems and to let them eat away at me! :-D

Maybe stress plays a big factor because the first time it happened to me I was just about to jump to high school. Hopefully they can figure out a cause soon enough. Would make it easier to combat as opposed to doctors observing GBS sufferers in the ICU and watching it take it's course. On the plus side I got a nifty little scar on my nose from when they pulled out the oxygen tube.

Did you find it had to relearn to walk after the first time?

Yea for sure it can be SUCH a long slow process just waiting for it to take its course let alone waiting for the neves to correct themselves again, then muscles to grow back in order. I wonder how much research is done on gBS? I know here in Australia all doctors I've seen don't know or care about learning about the syndrome at all, so I doubt much research Is done.

Yes I did have to learn to walk again both times, and it was hard and strange, you think it would be like learning to ride a bike, you always remember. but you need to do it a very specific way so no muscles take short cuts Causing other muscles to work harder to compensate , this isn't only a leg muscle problem, i had to make sure i was retraining all my muscles in the correct order, lot of rehab and physio! how about you? Is your situation similar?

Did u have a Tracheotomy with a cuff? I found it so strange learning to breath again myself.

I think we would have matching scars :-)

So you have has GBS twice exactly 2 years apart as well?

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I have many many memories, dreams and voices but none while I was in a coma, I don't remember anything after having a NG tube in then next minute (approximately 2 weeks later) I was in ICU with a respirator down my throat so I have no memories from that time. A memory that has always stuck with me..my deceased grandmother was standing nest to my bed and told me everything will be ok and I will get better, tHis may have been hallucinations, my subconscious mind giving me encouragement or she really was standing by watching over me, whatever it was it made me more positive I would pull through.

There were many times I was completely dis orientated to where I was, who was there. I would think somebody was rubbing my legs for example and no one was there, things like this. I was on high doses of fentanyl so hullicinations and voices that were not there were pretty regular.

It was strange re adjusting into real life, it took around a year to be able to be able to do everything for myself again. I did have good family and friends who supported me through the whole ordeal and made it easier.

I will be back to continue, it's great! Thank you for the questions please continue asking questions :-) I would love to hear from any fellow GBS suffers

Was the second time a relapse? If so, it is extremely rare to survive it.

No it was another full bout. I a, so grateful to still be so healthy

Hello Reddit Community!

I am an occupational therapy student at San Jose State University and have a group assignment on Guillain-Barre Syndrome (GBS). In addition to presenting, we must find someone with GBS to interview. I would greatly appreciate if you could help me understand what you've been through. As a future OT I want to know how I can help my patients with GBS, in the best way possible. Below are some questions we are interested and hoping to learn more about:

How has GBS affected you personally and emotionally? What limitations do you experience in your daily activities (such as self-care, mobility, community involvement, social participation, etc.)? Are there any activities that you have difficulty with that you did not before? What area of your life has GBS had the biggest impact on? How do you find support on a daily basis? How do you cope/deal with GBS? How much assistance or help do you receive? Do you use any adaptive devices? If there was recovery, how long did it take? What intervention/therapy have/did you receive? Specifically, did you receive any services from occupational therapy? If so, what interventions/therapy?

Feel free to share whatever information you feel comfortable with. Anything would be greatly appreciated! Thank you so much.

Hi :-)

I am more then happy to help. Feel free to use any information out of my reddit thread also, as a lot of these questions have been answered there.

How has GBS affected you personally and emotionally?

Spending extensive periods of time in hospital made me grateful I was diagnosed with GBS rather then something with no chance of recovery.

What limitations do you experience in your daily activities (such as self-care, mobility, community involvement, social participation, etc.)?

Everyone who has had GBS would experience different levels of limitation due to life style before and after GBS and the extent of there illness. Every case is so different, I have had massive lifestyle changes as my shoulders were badly affected (the nerves that my scapular muscles rely on were badly damaged) and I have trouble doing activities I use to do, such as some sports or any type of heavy lifting. But socially I found out who cared when I was Absent for so long.

Are there any activities that you have difficulty with that you did not before?

I think I covered this in the last question but I can't do hand stands easily anymore!

What area of your life has GBS had the biggest impact on?

The time I spent in recover at such a young age. I was sick at 17 and 20 anyways in recovery for about 3 years 9 months in total.

How do you find support on a daily basis?

Living in Australia I am extremely lucky and grateful, I have all support I could ask for. Although I no longer require support, I have needed to go to the emergency department twice since being out of my re every period.

Too be continued...you can also contact me on [email protected]