Seen MS Nurse 4 first time today


I actually got to see my MS nurse today for the first time. She was very helpful and nice, trouble being she thinks I may have moved up or down the ladder, depends on which way you look at it. Now I won’t know until I see my neuro’ in May. It’s so frustrating. You can cope with knowing but it’s the unknown that bothers me. She thinks it may be SPMS. Ouch!!

Janet x x

Hi Janet

I have to say that I find that very unhelpful of your MS nurse to leave you like this especially when you have to wait until May to see a specialist. I didnt really think that was neccessarily the role of the nurse (or are they suppose to suggest/reclass your MS on their skills/knowledge). Or am I speaking out of turn here??

I would try not to worry and wait and see what the specialist says, afterall you dont want this sort of information making your symptoms worse. As we all know MS is soo unpredictable. Keep your chin up and wait and see what the specialist says.


Thanks Loola, I know you are right, it’s just frustrating after having had Ms for over 30 years and only just recently been dx as RRMS it was a bit of a shock to hear the nurse say she thought it was now SPMS.

As I had never seen a MS nurse before I didn’t know what to expect, but will now wait until May and see what neuro’ has to say.

Thank you for your reply.

Janet x x

How did she determine that you are now SPMS when you were only just diagnosed RRMS?! Methinks she is making decisions above her pay grade!

At least she’s helpful and nice - definitely a bonus

Karen x


To be absolutely honest I haven’t got a clue how she came to that conclusion. As I said I will now wait and see what my neuro’ says in May. Not a lot else I can do.

Janet x x

Hi Janet,

Did you see Fiona at Peterborough?

Love Jess

Hello Jess,

No I saw Geraldine who covers the Kent area, as that’s where I live.

May I ask what made you ask?

Janet x x

she is my ms nurse , did you get my message about wobblers jess [quote=“jessiej”]

Hi Janet,

Did you see Fiona at Peterborough?

Love Jess


Hi Janet, as someone who is still waiting for a definite dx after 14 yrs, I am very interested to know a bit more about your MS journey. When you say youve had MS for 30 yrs, yet were only diagnosed with RRMS recently, how were you labelled `before?

Hope you don`t mind me asking.

luv Pollx