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The more I read, the less I understand (still confused)!

How does a person know whether symptoms they are experiencing are just an exacerbation due to a previous relapse or a new one; do they have to be new symptoms that you haven’t had before for it to qualify as a relapse?

I suppose the only way to know for sure would be to have an MRI scan, but I can’t imagine they are going to do that each time, so there is the danger of putting symptoms down to MS which may in fact, be completely unrelated.

2008 Loss of colour vision (a few months)
2010 Severe depression & anxiety (9 years ongoing) - Fluoxetine 40mg / Bisoprolol 2.5mg
2010 Optic Neuritis (18 months)
2016 - present : Double vision (3 years ongoing) - managed by prism in glasses
2017 - present : Neuropathic Pain (ongoing) - 100mg Gabapentin
2017 - present : Constant need to pee (ongoing)
2017 - present : Fatigue (ongoing)

As I understand it, the purpose of DMD’s is to reduce the number / severity of further relapses but they can’t do anything about damage already done from previous relapses. So apart from managing the symptoms, all those listed above (if they are attributed to MS) have already happened, so basically can’t be made better by taking DMD’s.

I understand the argument for taking medication just in case, to ward off more serious relapses in the future - but it feels rather like locking the stable door after the horse has bolted. It’s the damage already done and the symptoms in the here and now that are causing the problems.

Please do what you can to lock that stable door. You don’t know what MS has up its sleeve for you, but it ain’t done with you yet, that’s for sure. :frowning:

Alison

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Alison is absolutely right and you don’t know what the next relapse is going to do. It might well affect parts of you that have so far been left alone in which case you want to reduce that chance. For example, you might wake up one day with legs that just don’t work. It’s a frightening thing to happen but you have the option to help prevent the worst of it and lessen the damage.

MS is full of surprises…

Take care.

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Too right, both Alison and Val have exactly the right attitude.

I have woken up and found that my legs didn’t work. Within 3 days, I went from hobbling round with crutches, to a complete inability to feel or use anything below the waist. I never walked properly again. That was 7 years ago - 15 years after MS entered my life.

So while you are relapsing remitting - even if you suspect maybe you are now entering a progressive phase, - taking a DMD is an insurance policy. It’s not 100% effective, but it’s the best you can hope for at the present time.

Sue

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When I last saw MS Nurse (November 2018) she was dismissive of symptoms I’d been experiencing, called it a pseudo-relapse.

So now I don’t know if other symptoms I’ve been experiencing - cramp like spasms in torso / vertigo - are MS related or not. I’m not keen on contacting her again only to be told “it doesn’t sound like a new relapse.” I felt as though she was acting as a filter, to weed out patients who might otherwise have insisted on seeing the Neurologist, but is an MS nurse qualified to determine whether something a person is experiencing is indeed a relapse or not?

I am struggling with some of the ‘symptoms’ I’m having, whether they are MS related or not and don’t know where to turn for help. GP seems fairly clueless.

When was the last time you saw your neurologist? I think you should bypass your MS nurse and get an appointment with him/her and talk about relapses / symptoms / possible DMDs etc.

What I would do is either phone the neurologists secretary and ask him/her if you can send an email via them to the neurologist, or just write to the neurologist.

Set out in your email/letter what you’ve told us and ask for an appointment.

They cant say no. And given that it appears your MS is ‘active’ and you’re not on any DMD, you should be prioritised.

They might want to do an MRI first (you could ask for one if it’s been a while since your last), but that just gives more information about your apparent relapses.

Sue

Looking back through my notes, the last time I actually saw the Neurologist was December 2017! I’ve only seen the MS Nurse since then. Wonder how long they normally leave it between Neurology appointments…?

Possibly, some symptoms can be reversed or reduced, eastendgirl. Even lesions visible on MRI can heal to a certain degree. I think that is especially the case with RRMS. I heard of a friend of a friend who had DMDs and then no further attacks to the present date. So he’s been symptom free for many years now. On the other hand, it is true that some damage doesn’t heal, but as people who answered you above have said, if you can still prevent future damage then that is a chance worth taking. It’s important to not give up hope though.

Wishing you all the very best.

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We were told that DMTs are like an insurance policy. Not a cure but can slow down relapses. The only issue I have is that no one can say which one will actually work for you. Wouldn’t it be great if a blood test could be developed to indicate the correct and effective drug to take. Rather than the "suck it and see " approach used at the moment.

My daughter has been on 3 drugs over the last few years none of which seemed to have worked. Things seems to have stabilised a bit lately but she is now probably SPMS.

However I believe it is still probably better to try the DMTs rather than regret it later.

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So I finally attended appointment with replacement Neurologist. He was very good, thorough, explained things in language I could understand. Had my letter to previous Neuro on file and went through it answering all my questions. Said I could take this as a 2nd opinion, that yes I do have RRMS. He is going to arrange for new MRI scan and then review results and decide on course of action from there. He even dictated the letter to my GP which will be copied to me, while I was there.

So there’s no getting away from it. I do have MS and I finally have to accept that.

The exacerbation of symptoms I’ve been experiencing over the past few months he believes have been triggered by recent trauma and said it’s not surprising I’m feeling as bad as I am. Recommended I step up the Gabapentin and restart the antidepressants.

In the meantime my GP has signed me off work, having only just started a new job (been there all of a month), my boss is going to be so pleased - not! But it was becoming more difficult to get through to the end of the week. My arms and legs feel like they’re on fire, fatigue is total.