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When to contact your MS nurse

Hi All,

Well, I think I’m having a relapse at the moment and my question is do I contact my MS nurse?

I don’t want steroids as the side-effects I get from them are MUCH worse than the current relapse I’m having and also my hospital is a long way from my house and quiet difficult for me to get to if I can help it.

I can cope with this relapse and I’m pretty sure there’s nothing else I can do aside from steroids, which I’ve already said I don’t want.

I’m not currently on any DMDs or anything but I just wondered if I should tell the nurses just so they can record it?

Which brings me to my second point- I’m a patient at the Walsgrave hospital and the MS nurse help line is down. I can ring the help desk and speak to my neuro’s secretary though if I so feel the need.

So, do I need to tell someone about this or shall I just deal with it on my own?

When do you need to speak to an MS nurse?!

Thanks!

Lion, :slight_smile:

I agree that it is important to keep your record up to date with news of MS activity. If the phone is being difficult, you could just write to him/her, saying that it’s OK and you don’t want steroids but here’s what’s happening and please make a note and ask them to let you know if they want to see you. Another option is to go to your GP and get him/her to examine you and write to the neurologist. That way you’ve got a doctor’s letter on the file rather than something self-reported. It is always possible that hte GP won’t touch you with a barge-pole and will insist instead that you go straight through the hospital route and leave the GP out of it. But it might be an option worth considering, particularly if you have a nice GP who understands about our difficulties in getting to the hospital.

Alison

Thanks for you answer Alison- I did call the neuro’s secretary and had my hospital notes updated and also managed to get my GP notes updated over the phone too, without going.

This was possible to do over the phone as I said I didn’t want steroids, so there was literally no reason for me to visit either the GP or the neuro and waste their time and miss work, etc.

Phew, now I just need to work out how best to recover from this relapse and I’ll be home and dry!

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Hi May,

I think if I were keen to start a DMD I could, but as I really haven’t had many relapses (one in the last year and I went almost 7 years before that without any), neither me nor my neuro think its necessary, because, as you said they are not proven to have a long term effect.

Also, I don’t qualify yet as I think you need to have 3 relapses a year before you’re considered for DMDs.

I don’t judge anyone who is taking the at all, I just don’t think they’re right for me at the moment.

L, :slight_smile:

Actually, it is supposed to be two relapses within two years to qualify for a DMD.

Any stricter qualification should be publicised along with the CCG that imposed it.

Geoff

I’m with you Lion - it’s a very personal decision. I was eligible (just) but declined DMDs - with my neuro’s backing - and have so far had a very good 4.5 year run without them.

I’m not scientifically or philosophically opposed to them, and, like you, don’t judge anybody who does go for them. But also like you, I just didn’t feel they were right for me.

My present neuro has a lower threshold for prescribing than the former one (still technically his boss I think), though the former would unhesitatingly have done so if I’d asked, but supported me fully when I declined. Even the present one is reluctant to prescribe, after 4.5 stable years, as he says he would have to counsel me about risks and side-effects, and that is not really an avenue you want to go down, when the patient’s done OK without for years.

I do realise I took something of a gamble - as I didn’t have a crystal ball - any more than anyone else. I did, however, have a strong belief I’d had MS for years before diagnosis, and therefore that it had already gone untreated for years - this rather undermined any sense of urgency, or the “start early” argument - we were at least ten years too late, and possibly 20, to “start early”.

Of course, if I had decided to take them, there would have been much back slapping about how well they’re working (assuming I hadn’t had some awful side-effect or allergic reaction), and I’d never have been any the wiser that I would have been OK without them too.

That’s the frustrating thing - you cannot know how many relapses you personally avoided - only statistical averages. In my case, I could not have avoided relapses I haven’t had anyway, so I’m of the opinion that thus far (4.5 years), DMDs would have made no difference to me, and indeed may have had some adverse impact on quality of life, with regular injections (only injectables were available at the time), possible side-effects, and so on. I certainly would have felt a lot more “medicalised” than I do.

If you feel you might be tempted to reconsider, now or in the future, do double-check the eligibility criteria, though. As per Geoff’s post, I think you may be wrong in assuming you don’t qualify anyway. The rule used to be two relapses in any two year window (which I only just met by the skin of my teeth - another two weeks and the second relapse would have fallen outside the window anyway).

I believe some neuros are now prescribing on less stringent criteria, although I’m not sure the NICE guidelines have officially changed, so I think if they were a stickler for the letter, they could still insist: “No, two in two years.”

T.

x

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What do the MS nurses at the Walsgrave do with themselves? Their answer phone has been unusable since the end of January and it is really hard to get to speak to them. I wouldn’t bother to try and get in touch with them if I were you, I’d just go to your GP and get him/her to note that you are having a relapse.