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Autoimmune disease

How long does a relapse last?

14 replies

BuenoSucia · 24/08/2022 09:35

I’ve been playing the waiting game for diagnosis for about 8 years - things shifting v fast now though due to:

just over 2 weeks ago I lost pretty much all my sight - can see a few feet in front of me, but that’s all. Can’t walk in a straight line etc.

when can I expect this to fuck off and let me get back to my normal low-level shenanigans? It’s highly depressing obviously.

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forlornlorna1 · 24/08/2022 09:47

What's your diagnosis?

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BuenoSucia · 24/08/2022 09:48

Oops missed that bit! No formal diagnosis yet, but assumed to be MS. Previous MRIs show lesions like Swiss cheese.

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JennyMule · 25/08/2022 22:30

When I had optic neuritis (RRMS) it was quite mild, only one eye but unfortunately already had v poor eyesight in the other. Think it improved noticeably after about 3 weeks but definitely took a while to resolve completely. Wishing you a swift recovery

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BuenoSucia · 26/08/2022 07:27

Thank you @JennyMule 🙏. I’ve been having diplopia which seems to be easing off now thank goodness and I’m now only seeing double in one direction. But still have pain and fatigue and feel like I’ve been on the beer all night with only an hour’s sleep.

I actually got new glasses just a few months ago and when the optician ran all her tests last week she said she’d be surprised if my eyes had deteriorated that much in such a short space of time. But no, eyes fine - nerves screwed.

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Roselilly36 · 26/08/2022 07:31

Have you been prescribed steroids/spoken to Neurologist OP?

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AnnieJ1985 · 26/08/2022 07:41

I am not in UK - of course you might not be either - so I have no experience of the process there

But it sounds like you are having a big relapse that, while it will go away eventually, you need medical help/treatment for.

Have you been seen by a neurologist at all? I wonder why you haven't been officially diagnosed with the lesions and relapses

Here we'd be put on an IV steroid (I know not everyone is keen on those) usually as an inpatient. I had optic neuritis once and it has left my eyes quite sensitive to light etc. It ended after a week or so, but I reckon the steroids sped that up

I have found that relapses feel like they have gone away, when the noticeable symptoms end, but it can be weeks before you realise you are starting to feel better

Take care, you are having a rotten time of it

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BuenoSucia · 26/08/2022 07:45

@Roselilly36 ive just finished a massive dose of oral steroids - because I got a Bell’s palsy after the first week 🙄 - which they decided wasn’t bell’s but just my face going mental and is mostly back to normal now.

my GP, optician, local hospital (CT scans last week to rule out other more pressing nasties) and next trust along neurology are all in discussion and I’m waiting to be seen “urgently”. I asked and they said this comes under urgent-urgent as opposed to regular urgent.

the last time I saw a neurologist was 3 days before the first lockdown when he confidently announced “I don’t think this covid will come to anything”. 🤦‍♀️😂

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Roselilly36 · 26/08/2022 07:51

Good luck OP. I have MS, mine was confirmed, after a second inflammatory attack that effected my vision. I hope you aren’t waiting too long to see the Neurologist, the sooner you are dx the better, if it turns out to be MS you can start on a disease modifying therapy.

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BuenoSucia · 26/08/2022 07:53

That’s what I want. I think mentally I’ve accepted that it is what it is. But I’d really like some DMTs because I can’t imagine seeing (ha!) out the rest of my years like this.

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SofiaAmes · 26/08/2022 07:53

Sorry if this sounds really basic and you already know this, but are you taking high levels of vitamin D? There's significant evidence that it can help with MS.

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BuenoSucia · 26/08/2022 07:56

@SofiaAmes i do because I live very north so it’s always been on my radar. However, my first “big” attack I was on a latitude with London, so who knows?

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Roselilly36 · 26/08/2022 08:03

Have your vit D levels been checked by a blood test? It is very common in MS patients to have low levels of vit D, I do take a supplement.

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BuenoSucia · 26/08/2022 08:34

Should I ask the GP to look at that or get the neurologist to investigate?

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Roselilly36 · 26/08/2022 09:57

GP will probably want to wait to see what Neuro suggests I expect. Could be either route really Neurologist writes to GP to request the blood tests. The Neurologist may do some specialist ones at the hospital too, this happened when I selected my first disease modifying drug, Rebif and then further ones when I changed to Tecfidera. I also had chest x ray too. Neurologist was keen to rule out any other conditions. Good luck OP.

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