m.s nurse

i have a diagnosis of benign m.s, should i have an m.s nurse?,

Assuming there are any in your area, I’d say it’s really up to you. The word “benign” in front really shouldn’t make any difference. In any case, a diagnosis of “benign” can usually only be made retrospectively, after ten years or more without major trouble. If you are being told sooner than that it’s “benign”, I’m questioning how on earth anybody can see into the future and KNOW you won’t have problems. 3.5 years after my diagnosis, I’m still doing fairly well, and my neuro team are coming to suspect what I did all along - that I may have had it years before diagnosis! But even now, nobody has stuck their neck out and called it “mild”, or “benign”, because we just don’t know. The best that can be said is it’s behaving fairly well at he moment. I know how to get in touch with an MS nurse if I ever wanted/needed to, but don’t have a named one assigned to me, and the one and only time I ever spoke to them, I found it a waste of time. They were very reluctant to change or increase my symptom relief, which was what I desperately needed, but instead offered me first “coffee and a chat” (What’s that meant to do?) and then, when I was more persistent that I really needed something more proactive, an unwanted physiotherapy appointment - which I went along to, just in case it might help - but they could cast no light on things. Eventually my GP prescribed quinine - which helped - and probably should have been tried in the first place, instead of passing me from pillar to post, with offers of coffee and physio. So I would think about what you want or need an MS nurse for, and firstly, whether it’s anything your GP might be able to help with. I found introducing an MS nurse into the loop just delayed anything effective being done. Everyone seemed to view prescribing as absolutely the last resort, and the more individuals involved, the more they all seemed to think it was up to someone else. I know some swear they’re the salt of the earth, but they must have had a different experience to me. Tina x

When I was newly diagnosed I expected to get an ms nurse, I had read what wonderful beings they were! However, like the previous reply my experience was rather different. I got hold of a telephone number for them, some 30 miles away, I never see one, and they don’t always return my calls, even though I ring only rarely. I don’t have a neurologist so it is them or my gp if I need advice on anything MS related. As my neurologist pointed out when he discharged me, not being willing to waste time seeing me when he has nothing to offer me, ms nurses know about ms, so if it is only advice or reassurance it might be worth asking for the telephone number and giving it a try.

My MS nurse is great and she is very proactive regarding medication and symptom relief. She has also referred me to different specialisms when I have needed them. She is very busy as she covers a wide area and sometimes takes a while to get back to me, but her advice is worth waiting for and the MS isn’t going anywhere! I realise I am lucky, however you won’t find out unless you try. Best of luck!

Which district do you live in Boo? I might consider moving lol because I’d be happy if my MS Nurse acknowledged my email titled HELP. She’s ignored 2 now and I need information/help.

Hi Chewitt,

May I suggest what I suggested to the first poster? i.e. don’t rule out your GP as an alternative. No, they are not experts in MS, but they can prescribe most things a neuro or MS nurse could (but not DMDs) and can refer to other specialists. If you’re getting no response from the MS nurse, I’d arrange an appointment with the GP - or telephone appointment, if that works out better for you, and you just want to ask a question. Explain you’re getting nowhere with the nurse. It’s not unreasonable to approach your GP in those circumstances.

If they can’t help, they might be able to jiffy things up with the nurse - they need to know you have an unresolved question/issue.

Tina

x