Appointment to see MS Nurse, what to expect


Hi people just after some info really I'e finally had a referral to see an MS nurse it not until September which seems like a long time to wait., is it normal to wait so long before you see the MS Nurse after you have seen your Neurologist which was last month?
I'm just wondering what does the MS Nurse do?
I have also had a referral to see a physiotherapist next month and I am wondering what to expect then.
Any help or advice will be appreciated. 

hi Jon. I was a little reluctant to go see the physio as I kinda made up my mind that it couldn't do much for me; but I went anyway. It was contempt prior to investigation. The first session we talked so she could get an understanding how ms affected me. She than gave a series of light excersises that have made a difference. She also gave me a gadget that I wear on my leg to stop with the 'foot drop'.

I also see an ms nurse ..... not really sure myself what she does???  

Hi Jon, it is a long time to see the nurse... but I think there are not many of them which is why it's such a wait.

I saw one a year or so ago. It was useful that I was able to spend so long with her (an hour!) so that I could talk about loads of symptoms that I don't get a chance to discuss with neuro. She didn't really tell me anything that I didn't know (I'd been coming on here for a few years so quite an expert myself!), but it did sort of help just to talk about it all. She did give me some useful tips on 'urine retention' (perhaps more info than you want!). 

I had 6 sessions of physio last year and that really was useful. She taught me a lot about 'core balance' and actually I haven't had a fall since. Some good exercises that improved my balance. She motivated me to take a walk every day when I'm able (which I've kept up) even if it's only up and down the corridor outside my flat. 

So yes seeing both was useful in different ways. I would suggest you start making a list now for the nurse. Anything, however small, that bothers you about MS, and they will also write a letter for benefits if you need one. 

Hope this helps,

Pat x


Thanks Pat and Be Positive, it's a while before I get to see either of them so Ive got a lot of time to think of stuff I will also be

going  with a family member who always knows what to say or ask (not my mum) I get on a lot better with the relative than I do

my mum  unfortunatley but hey ho so hopefully things should be ok.

Hi Jon First Of All Thank you For Your Welcome On My Posting,

My MS Nurse At My Local Hospital Is Really Good In Fact She Is Brilliant I See Her Every 9 Months Or So.

She Organises Awarness Classes And If Anything Is Bothering You She Will Refer You To The Appropiate Dept In The Hospital For eg If You Have Problems With Swallowing Or The Like She Would You Refer You The ENT Doctors Etc.

Look At Them As The Middle Man Between You And The Spealists (sorry for any spelling mistates) Also You Can Phone Them Anytime To Discuss Things With Them.

They Are Very Good At Getting You Equitment And Benefits You Are Entitled To.

The MS Nurse Will Be A Very Good Friend To You Over The Coming Years.

Take Care And All The Best

Regards Joe.

Thanks Joe he/she sounds like just the person I'm hoping to meet, such a shame that I have to wasit until September letdown befor I can see them

Jon It's Worth The Wait.

Stay Well.

Regards Joe.

You all make me very jealous. ln 30yrs of spms - l have never seen a ms nurse - apparently live to far from one and over the county line for the other. After diagnosis, l went 26yrs before seeing another consultant neuro.  This was arranged because l had asked my GP for LDN - then Sativex. The neurologist gave the go-ahead for the Sativex - but reckon he had not heard of LDN. l have now been taking ldn for 4yrs - with a private prescription. lts worth every penny. The Sativex l have taken for 2yrs - since it was licensed for ms use. NOW - my GP tells me that the senior partner in the practise has stopped her prescribing it. lt could be the PCT that have denied it. Sativex has transformed my life - making it so much easier to move about - and to sleep at night without the muscle pain in my legs. So even though the neuro recommends Sativex - l am still denied it.

lt is the only med - alongside ldn- that l do not sufffer dreadful side-effects.