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cooper
1 month ago

My flare has occurred for 3 or 4 months now. To be honest i didn’t even know the terminology for it, I was diagnosed last year but had some symptoms for 3 or 4 years.
I’m on ocrevus so it shouldn’t be anything new, its just historical problems manifesting themselves, but for too long. I am under so much stress at the moment.
I’m sure it will get better though i’m sure.


mlgilber1
1 month ago

I’ve had a flare up that lasted a couple months or a little longer. It wasn’t an actual relapse because the MRI didn’t show any new or active lesions. My nurse finally sent me for steroid infusions which helped resolve the flare of symptoms. It was weird because it wasn’t just old symptoms that flared up, but I experienced a couple new ones even without new lesions.


twiggy3
1 month ago

Thanks guys for your info


twiggy3
1 month ago

@mlgilber1
I had steroid tablets as thought it was a relapse. Turned out no new lesion. I’ve been very fortunate in having no relapses in 16 yrs and not many symptoms only when overworked. Never had a flare either this is the first, 6 weeks now and I haven’t been able to work. I’m a hairdresser so I just couldn’t do it. That’s why I’m worried as I can’t see an end to this . Had ms 22 years so started to think is it progressing. I just don’t know anymore . I feel out my comfort zone . 😔


mlgilber1
1 month ago

@twiggy3 I’m so sorry. I hope you recover soon and can make it back to work. Was it high dose steroid tablets? At first the on call neuro phoned me in tablets, but it was just a regular low dose pack so it only helped me feel better for a couple days. My neuro didn’t even want to treat my flare up or do MRIs, but thankfully my nurse listened to me and sent me for them and the infusions.


twiggy3
1 month ago

@mlgilber1
It was high dose 5 days , felt better for 3 then since then only a couple of goodish days which i had in middle of June. Ms nurse said it will get better in time. 😕


mlgilber1
1 month ago

@twiggy3 I hope you feel better soon!


itsmewithms
1 month ago

The best model I seen to explain this is the “leaky pool” model that Aaron Boster uses in this video: https://www.youtube.com/watch?v=fZPQ48N-nIs&t=154s
Basically even without a new lesion if your “reserve” drops you will expose existing symptoms. To prevent the leak you need to follow all the advice but the main things I watch for are sleep and stress. Of course diet and hydration are biggies and avoiding heat if you are prone to issues with that.

I’ve transitioned from RRMS my neuro feels and more into SPMS (Dx 15 years ago, now 55) and haven’t had new lesions in some time. Have moved onto Ocrevus for a DMT). I have more a return of prior symptoms instead of new ones so feel like I am always fighting the same battle 😉 but at least I know my enemy! I’m trying to take better care of myself and keep pushing off progression.


hannah_clayson
1 month ago

I went through a relapse in October, first ‘big one’ since I was diagnosed 7 years ago, and I still haven’t been able to recover from it 9 months on . I had a neurologist appointment last week to discuss either a 3rd round of Lemtrada or to go onto ocrvus (which should have been in April but Covid had other plans), and the euro broke the news to me that I an entering the progressive phase and that another dose of Lemtrada or trying another DMT would more than likely been ineffective for me. To be honest, its not the entering SPMS that has necessarily bothered me as such, it’s there not being any DMTs available for me for the first time in 7 years that got me.

Please don’t let the longevity of your recent flare over ride the treatment outlook that you are receiving at the moment, and if not then please speak to your nurse/neuro on getting started on them.


twiggy3
1 month ago

@hannah_clayson
Hi thankyou for advice. Because this isn’t a new lesion relapse mri said so. It’s something I’ve not experienced before , This is a flare up of old symptoms so I’m a little out my depth. Not knowing why it’s happened after 16 yrs of nothing. I’m pretty stable usually . 😔


robyn_bain
1 month ago

I’ve been in mine since February still not away medication has been changed and over the last few weeks ive extremely slowly been getting a bit better i was told when i asked this exact question how long is a piece of string


twiggy3
3 weeks ago

@cooper
Sorry for my late reply and thanks for your info on your flare up. Have you had one before ?. Mine is still going on but no new active relapse on mri. Never had this happen before so it’s all new to me even tho I’m 22 yrs in with ms. Thanks


rob_woodhouse
3 weeks ago

Hi @twiggy3 I’ve had ms for getting on for 20 years and always thought of myself as lucky until 6 months ago and now I can’t work either I’m a site manager so it doesn’t look very good if the boss looks drunk lol ms isn’t easy and this flare up is probably the hardest thing I’ve ever gone through. But on a lighter not it is the weekend


twiggy3
3 weeks ago

@rob_woodhouse
Hi thanks for replying. Is yours a relapse or flare up of old symptoms?. I’ve only ever had 2 relapses 16 yrs back. Never experienced a flare of old symptoms like this 😕. I’m a hairdresser so me and anything sharp at the moment don’t mix well. Missing work and my old normal self , trying to be positive as nurse said it will pass. It’s hard sometimes tho with not having this happen before. ☺


twiggy3
3 weeks ago

@rob_woodhouse
Sorry to mention are you SPMS ? I’m still RRMS well that’s what they think ? Sorry your struggling


rob_woodhouse
3 weeks ago

@twiggy3
I’m spms I think it’s a relapse as there the same symptoms just worse my ms nurse isn’t very forthcoming with information I’ve just had an mri so it will be interesting to find out the results. I hope to get back to my old self because I don’t feel like me at the minute. Isn’t ms shit lol


twiggy3
3 weeks ago

@rob_woodhouse
Sorry to ask when you say same symptoms is it the symptoms you already have but worse. My flare up feels like when I was diagnosed but no way as bad. Lots of different symptoms. But because I’m symptom free usually ( I’m very grateful for that ) I thought it was a relapse, but no new lesion. And yes ms is a bummer when it says hello ?


twiggy3
3 weeks ago

@rob_woodhouse
What I mean is yours could easily be a flare up of symptoms you’ve already had. So no new lesion on mri possibly 🤔


rob_woodhouse
3 weeks ago

@ twiggy3
When I was first diagnosed it was with double vision and a slight stiffening of my left leg now it is lack of balance stiff left leg (can’t bend my knee) and severe weakness in my left arm and legs a my eyes are a bit blurry to top it off I think I need scrapping to be honest lol


twiggy3
3 weeks ago

@rob_woodhouse
That sounds like a plenty of fish profile 🤣. Joking aside, I do know how your feeling and I’m finding it hard to say it’s not forever to myself and stay a little positive .


rob_woodhouse
3 weeks ago

@twiggy
Not much of a catch am I 😂
I feel the same it’s hard to fell positive when you feel so crap with no sight of the end of the tunnel and feeling a burden to my wife doesn’t help but without her I’d be stuck


rob_woodhouse
3 weeks ago

@twiggy3
Get the violins out 🤣🤣 🎻 🎻🎻


twiggy3
3 weeks ago

@rob_woodhouse
My partner is coming over soon and I just hope he’s not expecting a long walk on the beach with wind blowing thru my hair extensions and false eyelashes just of a love island catwalk. Cos he’s gonna be disappointed. Seriously tho my hairs real 😁. Please take care and let me know how your getting on .


rob_woodhouse
3 weeks ago

@twiggy3
You too sometimes it’s good to get what an arse hole ms is off your chest with someone who is feeling the same hope you feel better soon

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