You have just been told it is Guillain-Barré.
Here is what a ten-minute appointment cannot cover: what is happening to your body, which questions to ask, and what recovery actually looks like. Free, written by someone who has been through it.
Getting worse quickly? Increasing weakness, trouble breathing or swallowing: call your emergency number (112 in Europe, 911 in the US). If you are already in hospital, ask for the doctor on duty now. Do not wait for the next ward round.
Waiting is not neutral
Guillain-Barré is rare: roughly one to two people per hundred thousand per year. Which means most of the clinicians you meet have seen it a handful of times in a career, and that you are often the only person in the room who has read everything about your own illness.
Meanwhile deterioration gets answered with "let us take another look tomorrow". That sounds careful. For an illness that keeps going, it is not. Every day of waiting is a day where damage accumulates that you then spend months training back.
You should not have to become an expert in your own rare disease to get decent care. But if you have one, you deserve the tools to become one anyway.
What you will find here
Relapse and CIDP
The distinction that decides your whole treatment, and that is routinely made too late.
Read moreWhat is GBS?
What happens in your body, how fast it moves, and what the variants mean for recovery.
Read moreTreatment
IVIg and plasma exchange in plain language, and what the evidence says about a second course.
Read moreRecovery
How long it really takes, which lasting symptoms are common, and what actually helps.
Read moreMiller Fisher syndrome
The variant that starts with double vision instead of leg weakness, and is often missed.
Read moreQuestions to ask
A printable list by stage of the illness, with the reasoning behind each question.
Read moreWhy I made this
I was 21 when I got Guillain-Barré. I spent about a year in hospitals and rehabilitation clinics. I relapsed four times, and it eventually turned out not to be ordinary GBS but acute-onset CIDP: a condition that needs maintenance treatment rather than waiting.
In that hospital bed I read every study I could find, because I could feel that nobody else was going to. I know exactly what it costs to be the only informed person in the room, and how badly you need someone to believe you.
I was told I would not leave my wheelchair. That is not what happened. This site is what I wanted to find back then.
I am not a doctor. Everything here about the illness carries a source you can check yourself. Use it to ask better questions, not to refuse or delay treatment.
Where to start
Understand what is happening
Read it in plain language, written the way someone should have explained it to you.
Read the guidePrepare your next appointment
Download the free Companion and take its questions into the room with you.
Download the CompanionRecover on your own timeline
Use the recovery guides for the part that starts after discharge, which nobody prepares you for.
Go to recovery
When you get Guillain-Barré you lose two things at once: control of your body, and your say in what happens to it. I know, because it happened to me. This site holds what I wanted back then: plain-language explanations, the questions to ask your neurologist, and the studies you can point at. You do not get control of your body back straight away. Your say, you can have now.