Letisha Charles-Thomas received a diagnosis of relapsing remitting MS after months of tests and appointments, and talks about how the process has changed her life.
One day in October 2018, I woke up and had a slight blur/fuzziness across my right eye that just didn’t go away. It was really hard to describe because at first, I could still see - but it was like looking through a smeary window. I went to the opticians and was advised to get it looked into further. The following day I went to the eye emergency, where they carried out numerous scans and tests but said there was nothing wrong with my eye. However, they booked me a follow up visual field test as a precaution.
Two weeks later and my vision had reduced, I had developed blind spots and it started throwing off my balance. I remember watching TV and just realising I could not see clearly at all. I went back to the eye emergency, where they did the same scans and tests as before but this time said I could have inflammation at the back of my eye, which could take weeks-months to improve.
The following two weeks I had my visual field test and consultant appointment. My vision had significantly decreased by this stage, I could hardly see. The consultant started to say they thought I had a lazy eye, until they looked at my test results, which caused confusion and concern. I was sent for an emergency brain MRI.
I was diagnosed with optic neuritis as clinically isolated syndrome in early December 2018. The consultant briefly mentioned MS and asked if I had heard of it, which I had but I knew absolutely nothing about it. I was also advised that due to other areas of inflammation on my brain, I had a more than 50% chance of this happening again.
However, I wasn't told what symptoms to look out for, nor was I given any contact information in case I did notice changes. I do think that I would have made an effort to reduce my risk of relapse if I had more information on how to protect myself back then.
In February 2019, I started going to the toilet a lot more – there were days when I went to the toilet over 20 times. By March, I was struggling with sensitivity to light and headaches but my vision had pretty much returned to normal and I was discharged from the eye clinic. Alongside the urinary frequency (neurologist referred me to a urologist who did numerous tests and found no bladder problem), I also started to experience weakness in my left leg and arm.
In April 2019, my workplace at the time started offering private medical care. I booked a private appointment with a neurologist who referred me to his colleague who focused on MS. I was sent for another MRI and a lumbar puncture. In May, I received my diagnosis of relapsing remitting multiple sclerosis. I was 25.
I felt sad but mostly relieved. The not knowing and uncertainty was really hard for me. I’m someone who likes to plan and know all relevant information and without a diagnosis I felt I couldn’t be in control of anything.
Given that I already had the diagnosis of CIS, I am surprised that my bladder symptoms, headaches and weakness didn't ring any bells for the neurologist and urologist I saw in March. Maybe I would not have needed to see the private specialist and have the extra tests.
I didn’t dwell on the negatives of the situation, I focused on the positives and how I could be better for myself. I was offered a choice of disease modifying drug (DMD) and I chose Ocrevus, as it's highly effective and suits my life best. I didn't want to self-inject or take tablets every day. I started Ocrevus in November 2019 – I had some manageable side effects after the first half dose, which caused delays but have been feeling good since receiving the second half dose. Unfortunately, due to Covid-19 my subsequent infusion has been delayed, and I haven't heard when the next one will be.
MS has definitely changed me. I’m not the same person I was before MS or during diagnosis. I do more for myself. I make a conscious effort to push myself. Of course, I have down days but I stay positive and keep going. Things that really keep me going are; cooking, writing and exercise. MS has also given me the push to do things I’ve always wanted to do but been a little afraid of. I’ve just started my blog and will be starting my own business before the end of the year.
Updated NICE multiple sclerosis guideline contains some good news and some bad news
22/06/2022 - 00:00
There are some positive points in the revised 2022 guideline but the MS Trust is disappointed that NICE has been unable to recommend Fampyra.
Connors letter to MS
21/06/2022 - 00:00
In 2022, Connor will be taking part in the Great North Run to support the MS Trust. Here, Connor writes a letter to MS, openly sharing his thoughts on the condition his sister was diagnosed with at the age of 14.
Why is Pride month important to the MS Trust?
16/06/2022 - 00:00
As part of our Pride month celebrations, two of the MS Trust team who identify as members of the LGBTQ+ community, sat down with David Martin, the MS Trust’s CEO, to discuss the importance of celebrating the LGBTQ+ community - not just in June but throughout the year.
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