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@Lins 

Last reply

Lins

Newly diagnosed / first relapse

Hello all I’m new to all this and really looking to connect and make some friends. I was diagnosed with CIS about a year a go and more recently that was reviewed to a diagnosis of MS following a period of new symptoms. Mainly trigeminal neuralgia and extreme fatigue. However about a week ago I experienced a full on relapse. I can honestly say it was the most awful thing I’ve ever experienced and I was completely unprepared. I wondered if others had been briefed as to what a relapse may look like? What they should / could do? I called 111 who sent me to ED and they treated me appallingly. I was left in tears and I never want to go back. I have just finished a 5 day course of steroids and I’m going to the relapse clinic tomorrow. I am due to start Kesimpta soon and I’m feeling optimistic about the future don’t get me wrong but the whole relapse experience has left me feeling quite sure that there are many people in the health profession that don’t really understand how awful MS can be. But perhaps I’m being unfair. Anyway, would love to hear from people and learn about how you have travelled along in your MS journey. Lins 😊
Brighton, United Kingdom
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@AndreaG
@AndreaG
 

@Lins Sorry to hear about your experience but it all sounds about right. I ended up in hospital with my MS after my first relapse, they didn't have a clue. You are quite correct in your comment re the NHS. Relapses mean different things to different people. My relapse involves bits of me going numb, which come back after about 6-8 weeks. No-one warned me what shape my relapse would take, and then your MS team say "contact us if you have any problems". That's when you find you can't contact anyone, leave lots of messages and emails, for them to contact you several days later. Hindsight is a wonderful thing, I've lived with my MS for 17 years now and know what to expect, but when it happens that first time, you are in a world of unknowns and have to navigate it the best you can. Welcome and good luck.

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@CharlouiseXo
@CharlouiseXo
 

I had my first full blown relapse 8 weeks ago and I'm still experiencing symptoms now. Hoping this isn't going to be me for the rest of my life. I just started off falling to the left constantly, followed by walking to the left, banging myself on doors walls. Dizziness, vertigo, pressure headache, double vision, weakness of left leg and left arm, numbness the list goes on and I still have some of the same symtpms like my leg and arm are still weak. The whole left side of my mouth is completely numb, and so Is my face. Still waiting for my lumbar puncture results to confirm my diagnosis but they said I definitely have it 😥 ontop of all of this, I just fount out I'm pregnant too! I'm terrified of life right now. They haven't started me on any medication, I got sent home from hospital and I feel like I've just been left to get on with it. I am struggling mentally 😥 it's so difficult. I'm 28 and have 2 children who are 12 and 2, it's such a scary time I grieve for the person. I hope you're okay xxx

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