MS nurse, do you have one?

Do you have to have a firm Dx from a Neuro to see one? I have had one appt with Neuro and my MRI was clear, but my Gp thinks it is MS and is treating me as such, wants me to remain on Neuro’s books and have annual MRI’s. Not seeing Neuro agin in till Nov, I did not know when I saw Neuro that my sister who has RRMS, also has a clear MRI. My Gp is very good, but knows little about MS, although admits she has had another patient like me, who went from a clear MRI to beginning Dx 2 years later after a follow up MRI showed several lesions.

I don’t think a GP can refer you to an MS nurse unless you are diagnosed with MS (e.g. if you move into a new area or just haven’t seen a neuro in a while). A neuro, however, can refer anyone to an MS nurse - with or without a formal diagnosis.

There are a lot of other services that are open to you though because GPs can refer people to neurophysio, speech therapy, OT, etc, so it’s not a disaster to not have an MS nurse.

Karen x

Hi I don’t have dx yet but have seen ms nurse and have physio and ot helping me. She referred me to them. So I’d say and ms nurse is a real benefit without a dx. Neuro referred me x

Its worth asking your neuro particularly if you are battling with symptoms. My first neuro after much badgering as I had on/off flair ups almost every month-6weeks from april this year, said I could use the MS nurse service. I in the end have gone for a second opinion elsewhere just because the rapport I have with that neuro is terrible. He really doesn’t listen and I felt like he was almost waiting for me to not be able to walk or something before he took things more seriously. Oh and by the way I have seen my second neuro who has referred me to an MS specialist. My MRI’s showed non-specific brain lesions (2 stable 6 months apart) but otherwise almost normal exams apart from reduced sensation on neuro exam. So I guess you’re right perhaps not everyone has classic lesions or has to have lesions to begin with perhaps. Will see what this MS specialist says.

Good luck.