Referred to MS specialist nurse


Over the last 8 months I have collapsed 3 times, each time it has taken me several days to recover from feeling tired with no energy. I have seen my GP a couple of times who referred me to a neurologist. I had my appointment last week who did balance, walking, reflex tests etc. Along with ECG and blood tests. Today I have received an appointment with an MS specialist nurse on the 9th of January with no further explanation.

MS is not something that had crossed my mind. Should I be worried? Does anyone have any ideas what I should expect from this appointment??



surprising that you got an appointment with an ms specialist nurse before a formal diagnosis.

however the nurses are great.

they have most of the power of neuros and will offer you advice, refer you to other services (physio, OT), let your gp know which meds to prescribe etc.

perhaps the nurse can explain why you haven’t had formal diagnosis.

a good nurse together with a good GP are your best team.

you could ring the number that came on your appointment letter if you want answers now.

That, to be honest, sounds weird.

You aren’t normally diagnosed with MS without having had an MRI.

Sometimes people with strongly suggestive symptoms of MS will be referred to an MS nurse before a definite diagnosis is confirmed. But usually, the neurologist would have done an MRI before feeling that an MS or at least a CIS (Clinically Isolated Syndrome or ‘one off’ occurrence) diagnosis was likely.

Why not phone the neurologists secretary and ask if there is a letter due to come out to you which will explain the neurologists thinking?

2 months is a long time to be worried about it, so if you get no further information through the post or from the neuros secretary, I’d suggest you see your GP for further advice.


Thank you both for your reply. I too thought it was strange!! I phoned the number on my appointment letter today and they said they can’t discuss it over the phone. I think the GP is my next best option. Thanks again!!