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Meeting the MS nurses - without a full diagnosis

Hi everyone

Hope you are all well? and sorry for posting on Everyday living, but I wanted to hear views from people who have already done this.

I have recieved an appointment to attend my local MS centre and meet with the local MS nurses to discuss my recent diagnosis (which is “likely MS”).

Can I ask you good people, what should I expect from this meeting with them?

On my visit to the neuro a few months back, I was handed a leaflet about MS and also one which detailed DMDs and their differences, but have not been offered any. Since my meeting with the neuro, I think that I have had a couple of small relapses (they were pretty big to me, but not disabling) I spoke with the nurses about five weeks ago during these relapses on the phone and they told me to see my GP if things didn’t get better. I was keeping a diary about the things happening to me, what I thought were part of the relapse, but have stopped now, as I seem to have a massive list and feel like I am being paranoid.

I have a 2nd neuro appointment booked in for February. Do you think I may be asked to decide on a DMD to go on when I meet the nurses or is it more likely to be a sort of meet and greet type of appointment?

Sorry for all the questions, just want to go prepared and would be glad to hear of some other experiences.

Thanks

Hi number08 (feels slightly unfriendly to call you that),

I’m pretty sure it is a precondition for DMDs that you need a confirmed diagnosis, so I don’t think it’s likely you will be asked to choose a DMD until then. There would be obvious issues with someone who turned out not to have MS being prescribed such heavy-duty drugs.

Also, as knowledgeable as they are, a nurse wouldn’t be able to prescribe a DMD for you. It has to be a neuro, and not just any neuro at that - only a subset of neuros are licenced to prescribe DMDs.

I find it quite odd that you’ve been handed DMD literature, AND referred to an MS nurse, still without a definite diagnosis. But regions tend to vary in their approach to this.

I wasn’t referred to an MS nurse even after diagnosis, although I’ve never been sure if that’s the way it’s done round here, or if I slipped through the net somehow. I got a bit of an impression it was the latter, and that everybody thought someone else had already arranged it. It may have added to the confusion that I was diagnosed privately, but as I kept the same neuro on transfer to the NHS, there really shouldn’t have been any loss of continuity - he was in charge of my care under both systems, so he should have known whether I had an MS nurse, whether anyone had explained DMDs to me, and things like that! Luckily, I’m OK at researching by myself, because I think if I’d waited for anyone to tell me, nobody ever would! At least yours are a bit more proactive - or so it seems. Still don’t think you’ll be pressed for a decision on the spot, though.

Tina

hi number 8

my ms nurse was very keen for me to get on a dmd. i had read up on the choices and chose copaxone because it doesnt give the flu like side effects.

maybe that will be for your neuro appoinment though.

my ms nurse referred me to physio, occupational therapy, bladder nurse and they all helped me lots.

so have a think about services you’d like a referral to.

take information about your symptoms and your relapses.

good luck

carole x

My mum’s a nurse and when I was in hospital and ms was mentioned she immediately asked for me to see the ms nurse which I did even before my confirmed dx…but I had had mri scan and l.p. in hospital so I’m pretty sure she knew I had ms but it was up to the Neuro to confirm and make decisions on medication…she was there to talk through things with u…she explained what would happen if it’s ms n the procedure for dmd.

Good luck

Xx

My mum’s a nurse and when I was in hospital and ms was mentioned she immediately asked for me to see the ms nurse which I did even before my confirmed dx…but I had had mri scan and l.p. in hospital so I’m pretty sure she knew I had ms but it was up to the Neuro to confirm and make decisions on medication…she was there to talk through things with u…she explained what would happen if it’s ms n the procedure for dmd.

Good luck

Xx

Hi number08

Take your diary along - helps you remember your symptons. (yes, we all have a great long list, you’re not alone!)

MS nurse will ask you about symptoms - may measure urine in your bladder - i got put on tablets as I was going to the loo far to many times a day.

May ask if you’d like physio - I did 8 week course at the hospital then go to the local council gym once a week on referral.

Recommended me to the orthotics department and I got a foot up and toe off to help with my walking.

I’m seeing my MS nurse on Tuesday - have a little post it note in the back of my diary to jot down any questions. Otherwise I forget.

The MS nurse is there to help you and she will recommend things to your neuro.

Let us know how you get on.

Jen xx

ps don’t apologise for posting - that;s what Everyday Living is for and this is the right place to get answers.

Hi N8 , I guess it’ll be more of a meet and greet with the MS nurse , and an opportunity for “you” to ask questions about it all , of course (in my opinion) it’s difficult to ask the questions until you know what the definite diagnosis is , but I’d keep up with the diary of symptoms for now , so at least you can discuss the most worrying ones ,

I had a meeting with my MS nurse pre diagnosis too , and it was a bit of a non happening to be honest , she’d only been sent people that “had” been diagnosed before , and was sort of bewildered as to why I’d been sent to her ! ,

well I was bewildered too , the neuro appointment had just happened next door , he said he definitely “wasn’t” diagnosing MS !! , (first time I’d heard those M.S. letters mentioned) but was diagnosing ‘optic neuritis’ for now , then said he weren’t much of a people person ? , and to see the MS nurse next door who would "sort me out " ? ,

so, after saying hello , and us trying to guess why we (particularly me) were sat in her office ? , and why the neuro had sent me in ? I got a few leaflets about MS from her

The DMD discussion would come later via the neuro , should it need to , so I’d just relax for now (easier said than done) and see how it goes without too much planning

p.s. , when I did eventually go onto DMD’s (Rebif and then later Copaxone) it was with different Neuro’s at a different hospital , I think Anitra was saying about that , there are only certain Neuros that prescribe DMD’s at certain hospitals

John

Just wanted to say that upto 1 years dx, 3 relapses, and a fluctuating EDD score, I still got letters saying likely RRMS as the topic. At about the 1 year mark this changed to highly likely RRMS, then the last two letters (3 more relapses, 2 different DMDs) have been just RRMS. i did ask if they would make up their mind as to whether i had ms or not, i think this sort of prompted the update! i found the entire process bewildering and confusing, however the MS nurses have always been there at the end of the phone, especially when i got letters about someone called Sarah…! (it was a typo

Thanks for the replies everybody.