MS Nurses

Everyday living
1

Good evening folks,

Despite having been diagnosed a couple of years ago I’ve never been referred to an MS nurse, albeit I was told I would be. It’s just never happened. I’ll be visiting my GP soon for a non-MS related matter and I’m considering asking to be referred, if for no other reason than I think I should be.

Can you lovely people give me a flavour of what an MS nurse can do for a girl. Is it worth bothering an over-stretched NHS with such a request, considering my symptoms have not yet restricted me to any massive extent (eg., I’m still working, driving etc).

Thanks folks.

Anna

2

l have been waiting 32yrs for a MS Nurse. They are as rare as ‘hens teeth’ in my area.

3

Hi Messalina70,

An MS Nurse is really a person who can point you in the right direction re any MS related problems you might be going through. Also hopefully they will empathise with any problem(s) you might be going through and suggest the next step. They have all sorts of functions but its knowing someone is there to talk to between the short and occasional visit to your consultant.

Hope that helps,

Patrick

4

Hi Anna,

when I was dx 7 years ago I was told by my consultant I could use the services of a ms nurse but at the time I didn’t want to acknowledge the fact I had ms plus the fact i was having a relatively normal life.

It wasn’t until a few years later that I was having difficulty coming to terms with a progressive disability that I decided I really needed the ms nurse. So I phoned the hospital and was put through to her. I explained I was having problems and she made an appointment to go and see her.

It really helped having someone to talk to. I never see my neuro so it is a big help having someone to talk things through with once a year.

So maybe you will have to do what I did in order to see one, its well worth it.

Mags xx

5

I’ve never had one, and didn’t want one.

I’ve been offered “coffee and a chat” with one, but got the impression it would be a bit of a pointless “there, there” type exercise - not my style at all, and certainly not worth going all the way to hospital for.

I have a very pragmatic approach, and if I have a specific practical problem that needs fixing, I will ask, but I am not looking for general emotional support, and certainly not for additional hospital visits, just for a chat. I find it stressful to go to the hospital at all, and do not want additional visits with no clear goals. I think it’s a waste of my time, and probably a waste of theirs as well.

I have an appointment I did not request with an MS nurse in March, regarding very minor bladder issues. They have either lessened since I first mentioned it, or I have adjusted to it (there is no leaking or wetting involved - I just have a weaker bladder than I used to - but it’s no worse than some “normal” people have always been - just a bit different for me).

I am still in two minds whether to cancel it, as I’m pretty sure I will simply be told to drink more water, less coffee, and less wine, but that other than that, my toilet habits are not “excessive”, and there is no real problem at the moment. So I feel it will be a bit of a wasted journey, even now, and that the appointment could go to somebody who really wants it!

I realise the hospital are trying to be proactive, but they do not know me well enough to understand I am not the kind of person who wants intervention unless I’m really struggling, and have initiated it. If the request didn’t come from me, I just get stressed about it.

Tina

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6

Anna

I have a really good MS nurse. Extremely approachable and easily accessible, if I email or leave her a telephone message, a reply will usually arrive the next working day, sometimes the same day. She works closely with the consultant and calls me in for an appointment if she deems it necessary. Able to advise on most things MS related, she can supply literature, order bloods, and on one occasion tested my water whilst I waited. When I was on a DMD she monitored me closely. I am totally relaxed with her and will discuss anything, including the personal stuff. Oh yes, I believe she also does home visits, although I’ve never actually needed one of those.

I’m afraid I don’t know if all MS nurses have the same resources.

I also have a great consultant and a good GP (all NHS), so consider myself fortunate.

Ben

7

hi anna

like ben i see a ms nurse regularly.

i see 2 neurologists, one is a general neuro and i see him in bolton.

the other is a ms specialist and i see him at salford royal.

i see ms nurses at bolton or salford.

my last visit i saw the ms nurse consultant which is another level of ms nurse.

she looked at my injection sites and listened to what i said about having felt gradual worsening last year.

so she took me off copaxone and started me on tecfidera . she appears to be almost the specialist neuro.

so you see anna, it’s a lot of geography so will depend on where you live.

i don’t think an initial appointment with an ms nurse will stretch the nhs budget too much.

good luck

carole x

8

What a great response. Thanks so much, folks. You’ve given me plenty to ponder on

9

hiya

its a good idea to have a supportive ms nurse however its like every other job u get good ones and bad ones! if u get a good one cherish him/her as they should be your stepping stone to a wide range of support. if u get bad one ur frustration will increase 10fold…

ellie

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10

My own experience with MS nurses has not been brilliant. The only time I wanted information, it was about neuropathic pain in my face. The MS nurse was definitive that it had nothing to do wth the disease. But reading reliable information on the internet made me think it was extremely likely to be a rare(ish) MS symptom.

Having said that, I have had help from an NHS physio who has run an exercise class for people with MS, for years and years. She knows what services are available locally and tells class members when she thinks they need help and where to go. I think MS nurses usually provide this service, but you need to see them regularly (every six months?) for them to do this. You may never need their help but could have two visits a year, just in case. That doesn’t seem a lot to take from our poor, old overstretched NHS and it could mean that you get help sooner when you need it.

11

My MS nurse is wonderful! I have a home visit from her every six months but if I need her for anything in between visits, I ring her & always get a reply, either the same day, or the next. I think she is worth her weight in gold & over the years she’s often been the first person I’d call with any MS related issues.

So I would say yes, ask to be referred to a nurse…she may well be a person you’d appreciate in the years to come.

Good luck Anna

Rosina x

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12

I have been dx 18 years but have only started seeing an MS nurse for the last 8 years and then I was referred as I had a relapse and was referred to the neuro first who I saw. Then he referred me to the MS nurses. I now see an MS nurse twice a year. One appointment in the Nurse clinic and one appointment with the Neuro. My nurse has been very good, they see me regularly as I am on Copaxone and like to check how I’m doing. When I first was on DMD I started on Rebif and my nurse could see how it was affecting me-very bad headaches so suggested I took a break from Rebif and then try a different DMD. She also referred me for neuro physio and arranged for me to see a continence advisor and arranged a letter to show airlines that I had injectable drugs/syringes. I very rarely call them but they do respond to the calls when I do.

I would ask your GP for the MS nurse contact number and maybe give them a call- just so they are aware of you-if you feel you are coping fine at the mo then no worries but at least if you do need some advice/help in the future you know who to call.

Cathy.

13

I’ve have had the greatest MS Nurse for over 7 years now - she really is brilliant. When on Avonex I had 6 monthly appointments for check ups and bloods and can email or call anytime I have possible MS related issues.

When I had terrible fatigue she arranged a check-up and following that wrote to my GP recommending Modafinil. She arranged an MRI where there was a suspicion I might have suffered a relapse and follow up MRIs every 2 years. SHe wrote to my GP recommending Gabapentin when that was appropriate.

She arranged for me to switch to Tecfidera when I enquired if I could, providing me all the reading material months before it was licenced and kept me updated on its approval by the NHS.

She provides me with information on all sorts of MS conferences, new treatments and research days and I have attended a number over the years as has she.

My MS Nurse has made my journey with MS far far better than it would have been with out her.

I can’t thank her enough for all her amazing work and assistance.

x G

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