Last reply 2 months ago
Relapse x2

Well here we are, I had a relapse on 15th August this year, first one in 6 years and it came out of the blue, huge shock to the system
Anyway long story short 10 weeks later on 1st November I had a second relapse which has been much worse mentally and physically than the first.
I’ve been on a massive rollercoaster of emotions to the point of feeling suicidal.
Thankfully due to the massive support of family, friends and my MS team I got through the darkest thoughts and I cant say I’m over it, things just feel a bit better this week.
I am usually I very positive person and I need to just dig deep and find her again!!!

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2 months ago

@nikki_weller , that positive person is still there.

Be kind to yourself, even pamper yourself. Ms Positivity will be sure to show her face again.

2 months ago

Are you now considering a DMT? A couple hits within a year could signal it is turning more aggressive?

2 months ago

After struggling for a diagnosis, I’ve unfortunately in October suffered my second relapse this year. I felt worse with the second relapse emotionally than the first even though the first was more traumatic for my body. So I feel what you wrote and it’s nice to know (however awful it is) that I’m not alone with feeling that way. I even felt suicidal and having lost my best friend to suicide it’s a feeling that I find impossible to compute. I start Tecfidera tomorrow so hopefully I will see some improvement. I think it’s natural to feel low and even strong women need a moment to tighten their pony tail before shit goes down! You’re just having that moment and that’s important too I think. But that’s just me. Hope you find your strength but more importantly your happiness

2 months ago

Hi Nikki
If you have an MS nurse it might be a positive thing to do to get in touch. I know it must feel like forever with the symptoms and the not having any control over any of it will leave you feeling helpless and hopeless. That’s human nature and completely normal.
You WILL look back on this time when you reflect but things rarely stay bad for ever. And that will be the same for you x

2 months ago

Dear nikki-weller,

I had two bad relapses in 2017, the second much worse than the first. I was in hospital for three weeks. Although it seems that I had MS (undiagnosed), I was formally diagnosed with “rapidly advancing” RRMS and started on Tysabri within weeks. Touch wood, I haven’t had a relapse since.

Since your relapses, have you had an M.R.I. scan? I hope you have had an appointment with your neurologist. I note that you’re not on any treatment. It may well be worth having a talk with a doctor to see how the future pans out. You may well decide not to change, and fair play to you, but it can be best to have all the options at least.

Whatever you plan to do, I wish you all the very best.

Take care, and good luck.


2 months ago

@nikki_weller Hi. I know that exacerbations are hard. I had a huge one last October and it was left untreated for four months as I went to 5 doctors and none of them knew what to do. I finally got an appointment with my neurologist and he admitted me to the hospital that day for MS exacerbation. I am still not fully recovered. I am so very happy that you have excellent support. I find comfort talking about my physical and emotional symptoms with other MSers. You can do this. We are stronger than we know and when MS pushes us we push back. We are in this fight together. Never ever lose hope.

2 months ago

I’m due to have an MRI scan on the 25th of this month which is classed as urgent but still takes weeks. I know they are incredibly busy, so I accept this.
I was due to start medication after 1st relapse bit now they have told me not to as I need something stronger with MS being so active right now.
They are talking about Cladribine as an option.
My MS nurse is great and has suggested a local charity that do oxygen therapy so I’m going to give that a go asap.
The positive from all this is that I have found and I can say how I feel without fear of judgement…

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