Guillain Barre. Anyone?

[Miljah]

A friend has been admitted to hospital, now intensive care, with GB. She's 57 ish.

What might we expect? I am not very close to her, not enough to know medical history, so I don't know what preceded it; but can I assume her breathing has been compromised if she is in ICU? Her (naturally distraught) DH has been told she is likely to make a full recovery, but it could take months, or years!!

Does anyone have any insight? Thanks.

[EauDeResistance]

This will be sketchy I'm sorry but my Uncle had it many years ago. He was in a really bad way. In ICU for a while and recovery was slow but he did recover fully - took months, not years in his case.

He didn't remember a lot about how ill he was except he was upset by some hallucinations he had when really poorly.

He's been perfectly fine for over 15-20 years now.

I hope your friend recovers.

[Miljah]

Thank you Eau. I think she's on a long road. And an uncertain one. How terrifying for everyone involved.

[MedSchoolRat]

Tony Benn had it... in 1980s? Decades before his career ended. Most people make a full recovery within ...about 18months? A minority have some long term minor impacts. A tiny minority are worse affected To my understanding, it's an over-reaction of the immune system to a seemingly ordinary infection. The rates of GBS linked to Zika virus are a bit high, but any infection can cause GBS.

It is quite serious. Thank goodness for modern medical care.

[Chocl8]

My MIL got this last summer. It came on suddenly (don't think medical history has anything to do with it). She was very poorly in intensive care for a good while but has made an amazing recovery. It affects nerves everywhere so she needed to be intubated to breathe until her lung control came back. The worst part was when she couldn’t communicate because she couldn’t move anything at all. They tried a blink/sign system but really it was tough for a little while. She’s had to work really hard at physio and overcome a lot, but we can’t believe how much she has improved. She’s almost back to her normal 1+ years later. I think that an iron will to fight it has helped her.
I watched a couple of youtube films when she was diagnosed to help me understand the disease and recovery (eg ‘Andrew’s story’ guillain barre syndrome)
I hope that your friend is ok and recovers as well as she can.

[Miljah]

Thank you so much. I will do some watching and reading. I suspect she might need ventilation to be on ICU. But thanks for your stories of (hard won) recoveries.

[weehoo]

Sorry to hear about your friend - one of my DC had it a couple of years ago and has since made a good recovery.

It's a rare condition, and even more so amongst young children. DC had quite a severe case (didn't stop breathing but had deep nerve damage) but was able to walk again after a few weeks. There are some long term/permanent issues but they're fairly minor.

There's a couple of support groups on FB but they do tend to give the impression that virtually everyone ends up permanently disabled because people with complications/harder recoveries are more prolific at posting I guess. Your friend has a very good chance of full/almost full recovery - it will just take a bit of time

[Miljah]

Thank you. It has come as a shock to us- I mean a lady we've known for 15 years, doyenne of our pub quiz team! 😊

Just sorting the travel arrangements for this month, and, pow.

Thank you for links and positive stories x

[Hatchimalla]

Had she recently had a flu vax? It's a documented side-effect. Hope she recovers!

[Butterflycookie]

My cousin recently died from it. He was only 33. I had never heard of this condition before. He didn’t live in the uk. I’m wondering if he did maybe he would’ve survived. All I knew what that he had leg pain for two days and slipped in a coma. It was so sudden. They said he had gulain barre syndrome but when I looked it up online it doesn’t say it causes death so I have no idea what actually happened

[weehoo]

@Butterflycookie I'm very sorry about your cousin I think the death rate is 1 in 20 or thereabouts and fatalities are usually in people who have other health complications.

There are several types of GBS - DC had the Acute Motor Axonal Neuropathy type - this is a more severe type and tends to have worse outcomes than the general GBS statistics. We think it was triggered by a viral illness

[WillaDaPeephole]

I don’t want to derail the thread, but to pick up the point about flu vaccine- there is thought to be an extra 1 case of GBS per million people vaccinated for flu, but an extra 17 cases of GBS per million people who are infected with the flu. In a flu outbreak, those who are vaccinated are less likely to have GBS as a group.

I’m sorry to hear about your friend- it sounds like she’s in for a long recovery period so great that she’s got friends to support her.

[Hatchimalla]

WillaDaPeephole
Where are those stats from please?

[WillaDaPeephole]

Hatchimalla. Sure, here you go:

Lehmann et al “Guillain-Barre syndrome after exposure to influenza virus” in Lancet Infectious Disease Sept 2010

And

Vellozzi et al “ Guillain-Barré syndrome, Influenza and Influenza Vaccine: A review of the epidemiologic evidence”. In Clinical Infectious Diseases, April 2014.