Questions for your neurologist

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About the diagnosis

• Which variant do I have: demyelinating or axonal? What is that based on?
• What did my lumbar puncture show: protein, cell count, and which day after my first symptoms?
• What did the nerve conduction study report, and when was it done?
• Which other causes have been excluded, and how?
• Which day after my first symptoms did I start deteriorating?

Why: demyelinating and axonal recover at very different rates. And a normal lumbar puncture in the first week means little, because protein usually rises only after about two weeks.

About treatment

• Which treatment am I getting, what total dose, over how many days?
• Does that dose match my current weight?
• How many days were there between my first symptoms and the start of treatment?
• When do you expect to see an effect, and what will we measure it by?
• What is the plan if I do not improve?

Why: the standard IVIg dose is 2 grams per kilogram over five days. If your weight has changed, or somebody is working from an old figure, your dose is wrong.

About monitoring in the acute phase

• How often is my breathing measured, and what was the last value?
• What are you watching for to decide whether I need intensive care?
• What is being done about clots, pressure sores and stiff joints?
• When does the physiotherapist come, given I cannot do anything myself yet?
• Is my swallowing being assessed?

Why: about a quarter of people with GBS need ventilation. That risk can be estimated with an existing scoring tool, and it should be actively tracked.

On deterioration, and this is the most important set

• How many times have I now deteriorated since the start? Is that counted in my records?
• How many weeks is it now since my first symptoms?
• Is this a treatment-related fluctuation, or should we be thinking about acute-onset CIDP?
• What are the criteria for that distinction, and where do I sit against them?
• Can the nerve conduction study be repeated?
• Will you consult a specialist GBS and CIDP centre, and put the answer in my notes?

Why: at three or more deteriorations, or deterioration beyond eight weeks, A-CIDP belongs on the table. CIDP needs maintenance treatment. Continuing to wait is not a neutral choice.

About pain

• What am I getting for the pain, and is it a drug that works on nerve pain?
• Why do paracetamol and anti-inflammatories work poorly here?
• When will we review whether it is enough?

Why: pain affects about two thirds of people with GBS and is frequently undertreated, because it is not always recognised as part of the illness.

About the future and discharge

• What is my score on the disability scale, and what is my MRC sum score?
• What do those numbers mean for my outlook?
• What rehabilitation is arranged, where, and when does it start?
• Who is my point of contact after discharge?
• What signs should make me get in touch immediately?
• When is my next review, and with whom?

If you feel you are not being taken seriously

These questions are not hostile. They are concrete, which is exactly what helps.

• I have been keeping track of what I can and cannot do. These are my notes. Would you look at them?
• I see a difference between [date] and today. How do you read that?
• What would have to happen before you changed the plan? Can we write that threshold down now?
• I would like my concern about this recorded in my notes.
• I would like a second opinion. Will you refer me?

All the questions on this page are also in the GBS Companion, together with guidance on reading your own test results and a daily log for recording deterioration.