@theatricalbent 

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theatricalbent

Diagnosis Stories

I see there's lots of people on here who've been diagnosed in the last year or two. I wondered how it was for people? It's helpful to hear what others have gone through and how they're coping. I'm interested to know how it started for you and how you were diagnosed? I was diagnosed in January 2020 when my left leg and buttock went numb along with some fingers in my left hand. I was still able to walk so had ignored it for two weeks. An MRI showed multiple brain and spinal lesions and I had a positive lumbar puncture. I also had lots of fatigue and nausea too. I've been told that I have quite active disease currently. I'd had MS scares in the past, the first in 2001 when I had a numb left hand and a patch on my nose/jaw, another in 2005 when I had optic neuritis and a few more since with a numb left foot. I've had so many MRI scans that I've lost count but until 2020 they were always negative. My diagnosis was pre-lockdown, so no excuse for this, but they told me I had MS lesions on the MRI scan over the phone whilst I was at work, which was a bit of a shock. I'm now under The National Hospital for Neurology at Queen Square in London who've been great. Due to COVID rules I didn't actually meet my consultant till a few weeks ago. It's all been a year and a half of telephone appointments which wasn't ideal. I started on Brabio injections three times a week but developed a new lesion in my brain in spite of this and I'm now on Kesimpta (Ofatumumab) which I recently started after a frustrating couple of months getting an appointment to start. I'm 2 doses in but it's going OK so far. I'm still working full-time but feel like I'm hanging on my fingernails some weeks. I'd be really interested to hear people's stories.
@Nola83

I was diagnosed in July 2021. After having a slight tingle in my left arm and hand I woke the next morning with a left facial drop so I headed to the emergency room at the hospital and there I had a CT scan at first with a doctor informing me I had MS or a stroke. I was admitted to the hospital and continued to get worse not being able to control the left side or walk as the leison was located in the brainstem. It took a month before I could leave the hospital, I am able to walk again now but have some residual sensory symptoms still. I had no prior MS symptoms and MRI confirmed just the active leison in the brainstem with a positive lumbar puncture. I just started Ocrevus treatment to prevent another huge attack. I suspect that receiving the Covid vaccine a couple of weeks earlier allowed the MS to develop as I one day was fine and the next not.

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@Clary

I was diagnosed in the middle of the pandemic. I saw my GP because I kept falling off my bike, when I went for a family bike ride. The GP immediately sent me for a MRI. He rang me with the results and told me it was probably MS. I remember collapsing on the floor and sitting by our patio door. It was devastating news. And that was the start of my MS journey. Here I am well over a year later and the diagnosis I received still feels devastating, but these days I don’t feel like sinking to the ground. Unfortunately sometimes I am just too wobbly and end up sitting anyway 😂. Hey ho!