My wife has a recent diagnosis of Guillain-Barrè Syndrome and wants to raise awareness. Ask her anything!

What is this syndrome? I've never heard of it before.

Edit:

Since I'm currently the top comment, here is a link to OPs gofundme. OP has had to stop working to care for his wife and young child, plus his wife has had several hospital admissions this year, so a couple spare pesos leaked in their direction would probably be appreciated.

Its an auto immune illness thats usually post-viral in nature or can be precipitated by a flu vaccine according to the consulting neurologists. Basically, a bug overworks the immune system which then turns against the body and attacks until it's forced to calm down - this is where her antibody treatment comes in to halt progression.

Mary wanted to mention that it's one of the leading causes of temporary fullbody 'locked in ' paralysis due to the inflammation of the peripheral nervous system. Approx 30% of suffers will recover with some level of disability whether it's motor, sensory, fatigue or visual. 95% of patients survive, even those who are mechanically ventilated in ICU for weeks / months. 5% die due to respiratory failure (and this figure includes a lack of suitable hospital equipment)

Paralysed patients are fully conscious and can hear everything around them, usually theyre unable to move enough to signal their consciousness. Its very common for these patients to be very hypersensitive to touch, so paralysis + lots of body rotation by nurses who aren't aware of consciousness = a whole LOT of pain for many weeks.

Repositioning is needed, it prevents skin breakdown. Sitting in one place for too long is very bad for the skin.

Bad for skin and bad for forming blood clots as well. Foot drop is another worry. Pressure ulcers can develop so quickly, it's awful. I'm not sure there's a way to avoid having to position them, but the pain is very unfortunate.

They used high top sneakers on my dad to avoid the foot drop thing.

Thanks for the idea. At the moment I'm walking as though I'm wearing flippers (when im able to walk)

My wife was diagnosed with GBS in February of this year. Thankfully we caught it relatively early and she was only in the hospital for a few weeks days. It was a scary experience, though!

I hope your wife makes a speedy recovery. Best wishes from Ohio.

Edit: I just talked to my wife about her experience and apparently her hospital stay lasted less than a week. So apparently it was days, not weeks, and I just remembered it wrong. It seemed like weeks! Since someone asked, here is what happened:

She had gone to the urgent care on a Saturday for a bad sinus infection and they sent her home saying it was viral and they couldn't do anything. On the following Wednesday, she still had the sinus infection and she also noticed a tingling feeling in her hands and feet and some muscle weakness. On Friday, she had all of those symptoms + double vision. She went back to the urgent care and they sent her to the Emergency room. In the ER they still didn't know what was going on and just diagnosed her with a severe sinus infection but gave her a referral to a neurologist due to the double vision and sent her home again. When we called the neurologist's office on Monday and described her symptoms, they urged us to come in as soon as possible. Apparently he couldn't believe they let her walk out of the ER. He diagnosed her with GBS and sent her to get checked into a hospital room immediately. Once she was in her room they started her on some sort of plasma drip which lasted a few hours and she had to get a dose of that once a day for five days. As soon as they started the first dose her double vision was improving, and by the second dose it was gone completely. However it took several weeks for all of the feeling to come back in her hands and feet and for the strength to come back to her legs. While we were in the hospital I just remember the sense of urgency from the hospital staff and their amazement that her symptoms weren't worse than they were. Apparently there have been more serious cases that required staying in the hospital for months and not just a few days...

Them you

Thank you

Pro tip: you can edit comments

Them you for telling thank that..

Them you for the laugh :)

How is your wife having GBS going to affect your day to day life?

Also, thank you to you and your wife for doing this AMA and raising awareness.

An obvious change is the fact she's not home with us, the house is eerily quiet without her. I've also had to leave work to care for both my wife and our 10month old son. The GBS has affected us financially as we've both given up employment but our main focus is on her recovery. This is her 3rd hospitalisation since diagnosis. She said youre most welcome, there should be more awareness.

Be so kind and set up a GoFundMe page or the like. People are often more then willing to help.

A friend of mine had GBS, after two years he is almost back to normal although his energy level is still lower as before. Luckily I live in a country where you can take time off from a job to take care of your partner and where health insurance is mandatory, otherwise he would have been in the same position you are in now. Some in the US would call us socialists probably, I prefer just: social.

Im happy to hear of your friends recovery. Gives me hope. The fatigue is horrible :(

Husband set one up for me already just to cover rehabilitation so i can get back to looking after our son. Neurological physiotherapists aren't cheap ($260 a session). I could cry but i wont.

http://www.gofundme.com/2w9a9kk

I'm sorry your family has to go through this. Are you from the US? How do you sustain yourselves with no jobs? One of my biggest fears is getting seriously ill with the crazy cost of healthcare.

Australia. Ive had ms long enough to know that i should save for rainy days, but little did i know physiotherapy and occupational therapy are ~$1000 a week. I'll have to just make do without it.

Australia doesn't have universal healthcare?

Someone weigh in if I'm wrong. It does have cover for things like hospital stay in a public hospital, and most of this person's medical bills (even the physio) should be covered in the public system with a diagnosis of GBS, but it sounds like they've gone for private cover? which is really expensive with shorter waiting times. And since they are both unemployed they would be losing out financially in a big way.

There's no such thing as govt funded physiotherapy long termin australia

Yeah you can get much faster treatment going private. Even if you have insurance you'd still get $200 back at the most on the 1000

Public hospital cover 6 weeks is public funded physiotherapy and that's it for me

What have you been doing to pass the time?

Also, my brother-in-law had GBS about a year ago and he seems nearly 100% better.

Pretty terrifying that this can happen from a "simple" infection.

Hope you make a full recovery. Don't skip your physio!

Ive been attempting cryptic crosswords but my eyes are affected as well (not ms related) so i cant read. I listen to A LOT of music .

Glad to hear your BIL is recovered. I'm still waiting for my second round of treatment, that's why I'm in hospital for the 3rd time.

I highly recommend podcasts, whatever you're interested in there's a podcast out there for it. Or you can listen to some celebrity podcasts, Joe rogan, Kevin smith, bill bur, Burt kreisher a bunch of others.

If you don't know where to find a decent podcast on a topic you're interested in here and now's probably the best time to ask about it.

I also suggest free courses on university websites like Yale and MIT. There are some fascinating subjects available.

My eyes arent great at focussing yet. Ive always wanted to do an online course but we will see hownlong this takes to go away

How did she realize something was wrong?

She was walking to her car after shopping and fell on the carpark stairs, her legs weren't strong enough to lift her onto the next step. After that, a very strong rush of tingling/numbness in the toes and calves.

Was there a trigger for it? I remember hearing that some allergic reactions can cause it.

A very severe case of viral meningitis beginning August 26th- she still has meningitis symptoms. The lumbar puncture confirmed both GBS and meningitis.

This is a weird and uncommon trigger for GBS, if you don't mind me asking, what was the infectious agent that caused the meningitis?

They suspected ebv the entire time but had to rule out a host of other serious issues such as lymphoma etc

I noticed on the proof pictures that she has MS as well. Is the GBS worsened by the MS? Are people with MS more likely to get GBS?

They are two seperare entities. MS affects my central nervous system. GbS affects my peripheral nervous system.

My cauda equina (peripheral nervous system in lower back) is all inflammed and demyelinated which is causing the FEELING of leg weakness, but my legs are actually very strong - in MS, leg weakness is actual leg weakness.

GBS had caused my bladder and bowel to STOP working as the peripheral nervous system innervates these. In MS, they're the opposite, incontinent.

There was a lot of back and forth with 2 groups of neurologists to workout which symptoms belong where.

I haven't had a new lesion or ms relapse in 6 years until now.

Theres no info to say MSers are more likely to have GBS.

Best of luck OP, my dad was fully paralyzed for 6 months due to this. He's entirely fine now.

How has it affected you so far?

My legs cannot hold me up for more than 10m walk, even so i walk with a cane and feel that feel like flippers. I'm tingly all over. I have meningitis still so i have neck and head pain virtually all of the time. My bowels don't work, my bladder is numb so i can't tell when i need to use the loo. The non functioning bowels don't allow me to feel hunger, so ive lost 8kg. I'm now 47kg (103pounds). My eyes don't focus for more than a few mins. My hands and mouth are numb. I have lost all reflexes in my legs.... just to name a few

I had this same illness when I was a freshman in highschool. It is not fun, and thanks to no medical insurance, my parents waited so damn long. Long enough that it was almost life threatening because it could have gotten to my heart and lung muscles apparently. I walked like a retard in school for 2 weeks. I was told by my parents that it was just a sinus infection. I asked daily to go to the hospital, and I was told I was stressing them out. Idk why. They finally took me when I broke a window from how much my head was killing me and how much I kept falling.

My question is, did she get a lazy eye from it? I did.

Oh no im so sorry to read that. I hopeyou've recovered. Its a terrible illness. No lazy eye, just inability to focus. It's easier to get by with my eyes closed

Never heard of this, so thanks for the information and thank you for sharing!

What is your wife's prognosis at this moment?

All the best for you and your wife!

My prognosis is looking great, I am now well out of the woods in terms of life threatening decline. Doctors cannot give information of recovery as each case is vastly different. If I dont recover within 12 months, it could take upwards of 3-4 years - again, this is variable. Thank you for the kind words.

My dad came down with GBS back in the seventies. Damn near killed him. Have you heard about the GBS Survivors Association? They are worth checking out.

I will have a look. Thank you very much. I hope your dad is ok.

I was diagnosed in 1999 with the miller-fisher variant of GBS while i was in high school. I went from ice skating on a Friday night to comatose by Sunday morning. Numbness spread from my lips and fingers to my whole body in about 8 hours. Fell asleep on my parents bathroom floor and was taken to the hospital. A link between an EBV and the GBS was noted and they performed a spinal tap that i didn't feel. I flatlined for roughly 90 seconds and was 13 days in a coma. The following weeks were a mixture of inability to speak or move and a hospital fuck up in medications where i was on fentanyl and methadone at the same time--some of the most horrific hallucinations one could imagine.

How is her mental health? That was the hardest part for me. Even when the hospital stopped sending the minister around and my parents became hopeful that I would recover, I was on the brink. I wanted to die. I was just tired. Tired of not being able to move. Tired of not being able to fully communicate. Tired of the medicine. Be mindful of her mental health. Its taxing and took me a long time to push through PT and regain a sense of normalcy.

edit: the people at childrens hospital in pittsburgh saved my life. and the physical therapy dept did more for my confidence in regaining myself than anyone else. After 4 months and a total of 50 lbs weight loss, I began to walk and recover. I still cant play guitar like i used to because of some slight motor loss, but im fine enough to be able to do normal everyday things. GBS awareness is next to zero. Thanks for this.

Im so sorry to hear of your MFV, it's not very nice at all. Im glad you pulled through, gives me hope for recovery. I really want ppl to be made aware that this happens- anytime! My mental health is fine, apart from the sheer frustration of not being able to move or care for my son, I'll be fine. Ms is much more taxing mentally. But ive taken it with a grain of salt. I have a life to live and a son to raise, im going to damn well do it haha I'm very resilient

I notice she also has MS, is there additional complications due to the MS?

Yes, the assault on my body made my MS relapse after 6 or so years symptom and lesion free. Im having a difficult time comprehending this.

... additionally as MS is also an auto immune illness - are they connected and were you at greater risk of catching the other? (regardless of the one you catch first)

No. both auto immune but my understanding is GBS is almost always post-viral syndrome

Can you get this as a complication to mono? I seem to remember a jr high classmate having mono and being out for a week or two, coming back, and then being out again for a really long time and I think it was gbs

Yes. That's the suspicion in my case

Have to say i'm a little bit skeptical of the intentions of this AMA. I work as a healthcare professional at a nearby hospital to The Alfred and from my understanding in Victoria your hospital bills would not amount to anywhere near 50k$ that you are looking for on your GoFundMe. You would have seen a social worker in hospital by now, who could help you applying for Centrelink payments for assistance while your wife is out of work. If you need to act as a "carer" for your wife you could apply for carer benefits... Your hospital bills should mostly be covered by Medicare, and you should be referred to a physiotherapy rehab program affiliated with the hospital, which under the public system would be covered by Medicare... Unless you went private of course. Could you please clarify where these funds will go? I hope foreigners understand that Australian healthcare system is no where near the state of the American system, and patients generally walk out of hospital without a massive bill. All the best with your recovery.

Hi thanks for your message. My hospital bill will not be 50k, yes that's correct. Its covered by the government. My local area rehab hospital in northern melbourne will not approve more than 6 weeks physio/ot under medicare then i will be left to my own devices. Given that neurophysios charge 240+ a session (as soon as they hear of an MS diagnosis) as ive been a previous patient of back to basics and Steps , I will honestly have no way to get rehab to return close to baseline. Given ill need 3 sessions a week of physio and monthly neurology visits through my private neuro (the alfred do not follow up with GBS patients once discharged) , theres really no option for me. If you have an actual solution, please help me find one.

How does it feel to have to have your husband use reddit for you?

Im more concerned he will rummage through my text messages, only kidding. It's actually a very nice gesture. It sucks to not see properly and do this myself. Im learning to delegate tasks

Nursing Student here. I took care of someone with Guillain-Barre, and felt a little lost. Any recommendations for healthcare providers you work with? What's one thing anyone taking care of an individual with Guillain-Barre should know/keep in mind?

Thanks, and best of luck to you!

A few things to know, patient is usually conscious and wants to be spoken to / involved in the world. At work i used to read the newspaper to patients (i worked in a hospital until last yr), and they can feel pain anytime you move them - their skin is hypersensitive

Just wanted to point out that your hospital name is in the paperwork (Melbournian here, so I recognised the place). Also, just wondering, do you have GBS on top of MS? Did it just seem like an exacerbation of the MS at the start? Imma neuro nurse and I've never seen both at the same time (or they might've just ruled it as MS stuff when it could've been GBS).

Oops @ hospital name. I blame the husband haha I had classic GBS symptoms, but the mri found active lesions in my cns so no other option but to call it an ms exacerbation (ms previously diagnosed). This felt nothing like an ms relapse. This was a sudden rush of tingling through toes, feet, calves, thighs up to torso then a sudden dead numbness on touch but boy could i feel the needle prick.

If people are looking for a way to help, I'd suggest giving to the GBS/CIDP Foundation. They score 100 out of 100 on Charity Navigator. My father-in-law has CIDP, we do a walk each year to raise awareness and fundraise. Many larger communities have similar walks.

GBS and CIDP (which is similar but GBS but is not self-limiting -- you just keep getting worse unless treated) are comparatively rare but life-changing medical conditions. Every dollar to support families and funding research has a large impact.

Yes ive read about their work - i have so mich respect. I definitely want to do my bit when im in the right situation, id love to help raise money for them, fundraise, volunteer

Best wishes for recovery to your wife, do you know her prognosis for recovery at all? Cos I know it can vary wildly, I had this condition in my teens though was lucky enough to not need assisted breathing and was walking in a year and a half.

Good on you for doing this AmA, it's one of those conditions that's rare enough that no-one's really heard of it (though you'll see it come up all the time in House MD differentials!) but once you've encountered it you meet people who know someone who knows someone who had it.

Prognosis is good. Recovery as you mentioned can vary. I'm really just trying to stay positive (it's my nature to be), and stick to rehab. I've used all of my publically funded physiotherapy sessions, so really trying to maximise the sessions i do have . They're very expensive services in Australia .

I'm glad to hear you didn't need the ventilator and you've recovered - youve given me hope. Thank you

Australia

Explains why she still looks good with something trying to take her down.

Haha thanks for the giggle. I should have refreshed my lipstick before this shot jk

As a nurse, I've had only one patient with GBS and I've wondered, is there anything you want your caregivers to be more aware of?

Yes. Our skin hurts when touched so warn the pt when youre going to rotate them. Talk to them, keep us included even if trivial. Read the paper or news to them. Switch the radio on. Theyre conscious the whole time

Is there anything we can do to help?

Spread the word!! Apparently this is quite uncommon however 4 of us were diagnosed in the one day whilst in hospital.. go figure.

My husband set up a go fund me to help with physiotherapy/rehab costs to walk again. It's ~$1000 a week in australia- so upsetting. I'd much rather the word be spread

My mom was diagnosed with GBS when she was pregnant with me 20 years ago, so thank you so much for bringing awareness to this disease that could have resulted in both of us not being here now. My question for you is how are you?

Thank you for this question. I'm going to take the positive route and say "im doing okay" , ive met others in far worse circumstances, although it doesn't negate my issues, i have a lot of appreciation for others who aren't doing as well. How are you?

Zika? Chikungunya? Other?

Doctors suspected Epstein Barre Virus but didn't screen for that.

go fund me site here: http://www.gofundme.com/2w9a9kk

You're amazing. Thank you from the bottom of my tachycardic heart

Have you guys had the "Talk" about when to let go? I've always wondered what I would do if faced with a loved one who wanted to leave us. It sounds like with this disease it's winnable, but does that convo ever come up?

Sending love!

Interesting question. Yes we've spoken about that in the past. 1. I dont want to rely on tracheostomy for life. 2. I want my organs donated. 3. If I'm brain dead, do not keep me alive "just in case"

Do you know the specific antibody that's causes this disease? Or is it a multitude of antibodies?

I wish i knew. They're thorough but not that thorough unfortunately.

I had GBS when I was a high school senior back in 2006 and had a fairly speedy recovery (I was in the hospital for a little more than a week) and no additional complications over the last decade. Hope you have the same fortune.

Is plasmapheresis still the best treatment?

Apparently it's tedious to set up so i was offered ivig treatment. Ive relapsed so going in for Plasmapheresis hopefully soon. It's unbearable

Is it possible to have normal reactions to previous flu shots, then randomly react negatively from a particular flu shot?

I recently met a man who's wife also has this syndrome, but as a result of a flu vaccine at an older age. I'm very sorry!

I have no idea to be honest. would be interesting to knpw though. I hope shes ok. Its not kind at all

Do you ever have acute episodes? I've only ever come across one person who suffers from GB and they didn't have the typical presentation of the chronic version in which there was the progression from the feet upwards over time. They instead would have acute episodes which could last from hours to days in which they would rapid lose the use of them feet, then legs and then higher, but could regain the use fairly rapidly, unlike my knowledge of chronic GB which is a slow degenerative process in which you don't recover?

It was diagnosed as aidp which is the term for gbs in australia. It's supposed to be acute but ive never had this before

What were your first symptoms?

My mother-in-law is currently in recovery from the same condition, thankfully they caught it reasonable early, although even after treatment she did get worse before she started to get better. So is at least able to walk short distances now. She had suffered from a bought vertigo and poor balance years before and at first she thought it was a reoccurance of this.

How did it affect you emotionally?

My mother-in-law got very depressed I think due just not being able to do anything, and just not knowing when things would ever improve.

I wish her a speedy recovery. It can be scary, definitely but in my case i was much more fearful of ms so this hasn't rattled me too much. Im very grateful to be alive tbh, just wishing my body would listen is a little frustrating

First symptoms; Weak feeling legs at first, i fell over stairs in public. Rush of tingly feeling up my toes to my feet and up to my torso within an hour. Suddenly turned dead numb. Tingly feeling started in my hands and mouth that's when i realised i was in trouble.

Sorry for this but is this dangerous?

Hope she'll be ok soon!

It would have been a different story for me if i didnt know the signs. I work in a major hospital and have met many GbS sufferers , so the doctors caught it before it affected my diaphragm which is the best one can hope for. I am out of the danger zone for now but theres a suspected relapse so doctors looking at more treatment.

Is it rare here in Australia?

4% of population apparently. I beg to differ

One of my best friends growing up was diagnosed with GB in first grade. We're in our early 30's now and he's completely recovered (minus a very minor twitch that comes out when he drinks). He's a workout-aholic, fitness instructor, did some amateur modeling...you get the idea.

Here's my dig. He is convinced he had Muscular Dystrophy. He's also equally convinced that he beat MD. I've on more than one occasion tried to explain that they are not the same disease (for starters, one is auto-immune, the other is genetic). But because the symptoms are obviously similar he is 100% sure he had MD, and is cured from it. He has even gone on a local talk show to discuss how he beat MD.

Have you ever met someone whose thought the same thing, confusing their disease simply over symptoms. Have any suggestions on how I could get through to him on this?

Dr google is a bad bad thing. I dont think you can convince him otherwise. Hes convinced hes lived a miracle and if thats what it takes for him to remain positive, i dont think it will change. Perhaps he needs to stop the talk to MD sufferers, it can be quite detrimental when they're not seeing the same improvements as him. Lots of neuro problems overlap in symptoms, we've just got to let real doctors do their job

Did your wife take any vaccine not long ago that triggered GBS?

No. Nothing. Zip. Zilch. Nadda.