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What to do if an MS episode happens?

Hi, my sister has MS but hasn’t had an episode for approx 3 years and, apart from a period of depression last year, has been getting on fine. She was away for a week staying with a cousin and she got pain down her right side and lost the feeling in her foot. She didn’t want to see a doctor, even though the symptoms went on all week and she felt very tired and weak. I made her a doctor’s appointment as soon as she got back and she’s now got steroids etc. She says she didn’t realise it was an MS episode, tho I had suggested to her on the phone that it might be.

My question is: is it important to get prompt treatment if you are experiencing an episode? I try not to intervene in her life too much unless she asks for help, but I don’t mind being bossy with her if it’s necessary!

Hi Miranda,

No, it has no bearing on the long-term outcome whether you receive prompt treatment, or indeed any treatment for an MS episode, AKA relapse. It’s not a medical emergency - with a few obvious exceptions, such as if the person experienced trouble breathing, taking food or water, or was unable to pass water.

Steroids are the only treatment usually offered, and these may help speed up recovery, but they come with quite a few risks and side-effects, and there is no evidence they improve long-term outcomes, so there may be an argument for giving them a miss - particularly if the episode is mild. Not all neurologists are enthusiastic prescribers, for those reasons.

Really, the only compelling reason for seeking prompt intervention is just in case the patient was mistaken, and whatever it was wasn’t their MS playing up! Another poster here once wrote - I don’t know how true it is - that the commonest cause of death among people with MS is ignoring something that wasn’t their MS. People who are used to living with chronic illness tend to assume everything’s down to that. But of course, we aren’t immune from other (serious) medical issues, so we can be at risk of ignoring something serious, on the basis it’s “only” the old MS again.

Particularly if symptoms are different and unexpected, compared to anything that’s gone before, it’s wise to check they are, in fact, due to MS, and not something unrelated.

The only other reason to get a relapse on record, even if you aren’t offered or don’t seek treatment for it, is that frequency and severity of relapses can have a bearing on which disease modifying drugs a patient qualifies for. Not all patients are on disease modifying drugs at all - some don’t want to be, and some don’t qualify. But if relapses aren’t recorded, they can’t count towards eligibility for a DMD - or a stronger one, if already on one.

So it’s not so much about relapses needing “urgent” treatment, as (a) making sure it really is a relapse, and not something else nasty that has nothing to do with MS, and (b) making sure the hospital is in the picture that a relapse has occurred, so this can be considered when planning future treatment.

Your sister won’t have come to any harm from not receiving steroids immediately - or even if she never had them at all.

I’ve never had steroids for any relapse - but that’s largely because most of them occurred before I was diagnosed. I was never offered steroids for the more severe relapse that eventually led to my diagnosis, and I never asked, because I didn’t particularly like the sound of them anyway. I’ve always said that my “red line” is if I ever couldn’t see or couldn’t walk. Then I’ll take the steroids, as it’s important to get better as soon as possible. But short of that, I’m prepared to let time and patience do the work. There’s no evidence you finish up in any worse position than if you’d had the steroids.

Tina

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Thanks Tina - that’s really interesting and helpful. In fact my sister has been prescribed steroids but isn’t sure whether to take them. Last time she had them she barely slept, lost a lot of weight ( not a common side-effect and very worrying as she became very underweight) and cried all the time. What do you think about alternative remedies?

Thanks again for your reply!

Hi Miranda,

I’m afraid I’m not the right person to ask about alternative remedies.]

Although I’ve managed to avoid steroids so far (and your sister having experienced the side effects, you’ll understand why I was none too keen), I didn’t do anything special instead.

It’s not that I’m against alternative remedies as such - although I do think there’s an awful lot of snake oil out there - I’ve just never found anything that made much (any?) difference for me. Like most people with MS, I’ve dabbled - for example, I’ve tried acupuncture. And every now and again, there’s some new supplement everybody’s raving about, and despite my scepticism, I’ve joined the bandwagon - and then found it didn’t work!

The only thing I take religiously is Vitamin D. I think most neuros and MS nurses now agree that ALL MS patients should be supplementing. However, even that has never made me feel better, and I didn’t expect it to. Maintaining good Vitamin D levels is thought to have some protective effect from relapses, but is definitely NOT a quick pick-me-up from a relapse you’ve already had, or in my experience, any good against symptoms either.

The other one your sister may want to consider is Vitamin B12, as a lot of people with MS are found to be low in that. The benefits are more hypothetical, but it’s used in the manufacture of myelin, so in theory, supplementing may provide more raw materials to do the repairs, and thus aid recovery. But the real picture is undoubtedly a lot more complex than that. Unfortunately, it’s not as simple as take one before bed, and in the morning, it will have been used to patch up all the damage.

I’ve never personally felt better on them, but take them only because of the theory it might help, rather than real personal experience that it does.

I really think it comes down to a choice of take the steroids, and live with the side-effects, or, if you’re a more patient type (or don’t have so many commitments that mean you HAVE to get better quickly), trust to time and nature.

The body WILL do the best fix it can, with or without steroids - just probably more slowly without. That’s the trade-off, if you decide you don’t want the side effects.

Everything’s a trade-off. There’s rarely a single right answer, that’s best for everyone.

Tina

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