How to get assigned a MS nurse ?

New diagnosis and before diagnosis
1

Hi, I’ve just joined MS Society today. Jan 2020 I had an episode on holiday and was told it was a stroke/brain tumour/cancer, got repatriated back to the UK, NHS did scans etc and told me it was possibly MS, had more scans and was told its almost certain MS. And nothing since around September 2020. I appreciate they are busy with covid but I am stuck in limbo. My research on google tells me i should be assigned an MS nurse, but i cannot reach anyone in the hospital for guidance on this matter.

Any advice would be appreciated, many thanks Alex

2

Hi Alex

Have you got contact details of the neuro?

If so contact his/her secretary to ask about the MS nurse.

covid is such a pest (, wanting to use far worse words) getting in the way of diagnosis and support.

Good luck Carole x

3

Hi, I doubt you would get assigned an MS nurse if you dont have a diagnosis of MS. But having said that, if the neuro is almost certain you have MS, then perhaps you will.

Boudsx

Ring Neurology again and leave a message.

4

Thanks for the advice guys. I did try calling the neuro many times a while back, but no answer. I guess I gave up trying. Will get on it again. Thanks Alex

5

I was assigned an MS nurse after being diagnosed with CIS and I am still assigned to one now. I am going onto medication, just waiting for it all to go through. I’ve had the initial bloodtests etc. So you can have an MS nurse without a diagnosis if MS, CIS will mean you get assigned one in some areas. I think the main thing is it depends on the area and funding etc. There is no harm on asking about it. I am a firm believer in asking and emailing or calling the neurology department, it is the way I have managed to get most of my results and appointments… I don’t know if it speeds the process up, but it certainly feels that way. B x

6

(I should say, my diagnosis is CIS still, not MS)