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What Should I expect from an MS Nurse ?

Hi, My Neuro referred me to an MS Nurse back in Jan and she wrote to say she would be in touch to make an appointment. Well I didnt head anythng so I’ve just called and left a message

Im just wondering exactly what to expect from this appointment as ive only ever spoken to my Neuro about MS. Is it just for relapses ? or can I ask questions that I’d ask my GP (but dont)

Sorry probably sounds like a really daft question but I dont want to sound like a complete nutter when she calls and go off on a tangent asking thing that should go to gp / neuro

Thanks, Alison

Think just ask her anything…will point you in another direction if doesn’t feel it’s her remit…would suggest that if it’s a question on ms she should be the person to answer Ms nurses vary tho…some better than others Julia

The MS Nurse my Neuro referred me to to was fab, I often think they are better than the Drs. They will answer any question so don’t feel daft at all. I wanted to know what the different injections looked like, my Neuro didn’t even have a sample but the Nurses do.

Good luck !

I met mine two weeks ago to discuss DMD. She asked what I already know about the condition and would of started from the beginning if I needed to.

She felt I was in relapse on meeting me for the first time as I was feeling rubbish and with raging old problems but some added new ones,so while there she voicemailed the consultant asking that he sees me in relapse clinic.

I dont know what that is either but that was 2 weeks ago and I havent heard anything!!

She gave me her number and said that if anything odd was going on or any queries to use her as first port of call.

From comments on here a good ms nurse is someone to keep hold off.

Pip

I call MS nurse,a toothfairy,u know they exist but neverr see them,then I got an appointment,and I had to cancel,the fairy story never came true ,lol awaiting a new appointment,and hopefully will see her

Hi Alison,

I see mine once a year - every May. But can phone or email.

They might do a bladder scan to see if you’re emptying your bladder probperly.

Advice on vitamins etc Vit D fish oil

Can give you leaflets to help you deal with certain areas of MS.

Mine told me about this website which has been a life saver for advice.

Top tip - write down any questions you have about MS and your symptoms, however trivial they may seem - otherwise you may forget.

Mine suggested baclofen for stiff muscles and contacted my Dr for prescription to be written. Also suggested

applying for Blue badge - a huge help to my life.

Hope you get an appt. soon,

Jen x

Thanks for all your replies

She’s just called back and I have an appointment for the 31st May

Thanks

Alison

I think the sort of questions you might ask either your neurologist or your GP about MS in general and your MS in particular are exactly the sort of questions your MS nurse should be able to help you with.

I hope you have a useful discussion.

Alison

x

symptoms like bladder and bowel problems - the ms nurse will refer you to a specialist team

difficulties with walking - the ms nurse will refer you to a podiatrist and a physiotherapist

difficulties in the home - the ms nurse will refer you to an occupational therapist

basically just tell her how your symptoms cause problems for you.

hopefully you will be referred to all the experts that you need

carole xxx

I used to have a fab MS nurse that really “got” me, we talked about anything and everything as MS has an impact on every part of life. She always used the disability score to cue her questions, but we spoke about work, family all sorts, I saw her every 4 months and would ring her when relapsing. Now I’m not so sure about the new one I have, he is a bit serious!! May be its because we haven’;t built the relationship yet.