Hi everyone, I’m Lou.
I’m 46 and have just been diagnosed with RRMS.
I wanted to share my story, as this forum has been a great help to me over the last year.
In 2006, I had my first neurological episode, which was diagnosed as transverse myelitis. An MRI showed a lesion on my neck, which affected my left side and use of my hand. I was given steroids, and after some time, I fully recovered.
My next episode came in 2018, when I experienced intermittent eye blurring and a buzzing sensation. Doctors diagnosed it as a flare-up of the previous TM, as no new lesions were found on the MRI.
In November 2024, I went numb from the waist down, which, over time, has left me with ongoing buzzing in my feet, legs, and groin. At the time, I was seen by a neurologist and told it was likely to be MS. However, after further MRIs showed no new lesions, I was told it was probably another TM flare-up and unlikely to be MS.
I was then referred to a specialist MS neurologist who reviewed my scans and actually found inflammation in my lower lumbar area and a new lesion in my brain that had been missed. I then had a lumbar puncture, and at my next appointment, I was officially diagnosed with RRMS. Fortunately, I was told that due to the long gaps between relapses, my MS is considered mild, which is a positive.
I’m due to start DMT treatment (Kesimpta) in the coming weeks 
2 Likes
Hi loulou-ar. I had a long period between my first two bouts of ms. Basically it was 11 years from my first problem when I lost my eyesight..one eye only. And then 11 years later I had a problem with balance and numbness in my legs. My ms nurse said that it would be diagnosed a lot quicker nowadays.. I’m not so sure about that. And even after all these years I’ve still got RRMS much to the surprise of my neurologist. At least I think that it was a surprise to her as she wanted another MRI scan to see what’s going on.
3 Likes
Hi Lou, thank you for sharing your story. I’ll send my thought below but please excuse of my poor writing just because my first language is not English.. 
It must have been very tough time before you reached the diagnosis and optimised treatment. I was diagnosed RRMS in 2021 but my first symptom (maybe Lhermitte’s sign) was in 2019 when Bechet’s disease was suspected considering several strange symptoms. After hearing the voices regarding MS, I’m sure symptoms and/or severities vary from person to person.
I’ve been also using Kesimpta since 2024, which I think have been effective without obvious relapsing so far 
Of course I hate MS but it also tells me tips to be kind to myself having enough rest and sleep, they are really important to deal with my conditions (perhaps more than meds??)
1 Like
Hi there,
Thank you for sharing your story. I am a similar age (45) and also just been diagnosed with RRMS, and also new to the forum. Maybe we’ll bump into each other on here
1 Like
Hey, thanks for your reply. I hope you are managing with the news.. It has slowly started to sink in for me. I should be starting my medication next month.. pls reach out if you ever need an ear!
1 Like
Hi,
Sorry to hear about the diagnosis - but at least now you can get on with treatment and start to push back.
I’ve been on Kesimpta for nearly two years and it’s worked very well for me so far. After the initial flu-like symptoms with the first loading dose or two, it’s been plain sailing. At this stage I don’t even think I’ve had more infections than before - side effects basically zero.
I am about the same age as you. Around the time of diagnosis MS dominated all of my life. But a couple of years on, it is not as bad as that, though obviously it’s often on my mind. I’ve also found keeping up with research a useful way to stay positive.
1 Like
Hello Lou,
Hope you’re keeping well.
How have you found being on Kesimpta? I am due to start on it soon, after being diagnosed at the age of 32.
1 Like
Hi jhibbs93, thanks for your msg.
I’m now on my 7 monthly injection and can honestly say it has not had any negative impact on my life. I haven’t suffered with any symptoms other than a bit of a runny nose..
My latest MRI showed no new lesions which is good news.
Just had my bloods taken this week to make sure I’m all good to continue 
Hope all goes okay with you, keep me posted 
1 Like
Hey, also just wanted to check in and ask how your doing following your diagnosis. I understand it’s a lot to deal with and hope you’re okay
All is good with me - had a my pneumococcal vaccine this week and my first dose of Kesimpta will be arriving in a couple of weeks time. Keen to get started but I’m so far feeling optimistic about the future of this disease!
2 Likes
That’s great news, well done 