What is it like to receive a diagnosis of multiple sclerosis?

For World MS Day 2024, five people with multiple sclerosis (MS) share their diagnosis experiences

“They said it was psychosomatic”

Martin Stokes was told for years there was nothing physically wrong with him

We believe we can trace my journey back to when I was 15, having experienced blackouts and migraines for no clear diagnosable reason throughout my teens.

In my 20s I was developing regular urinary tract infections (UTIs) with issues involving my bladder and bowels, alongside unexplained pins and needles and the beginnings of chronic pain in my abdomen.

In my late 20s there was an additional issue when I went blind in both eyes for a week. Following on from that there were years of hospital stays, misdiagnoses such as Crohn’s and ulcerative colitis, and thus I was wrongly medicated.

Inevitably, there were confusing symptoms due to the side effects of medication that made me unwell. Eventually, in 2016 it was suggested that all this could be psychosomatic, and I had the overwhelming feeling that the hospital was trying to wash their hands of me.

Eventually, in 2017 I experienced a sudden loss of the ability to walk, prompting a visit to a new hospital that would change my life forever. In a mere six hours, following a CT and MRI scan, a senior non-neurological A&E consultant revealed the truth, and so I was officially diagnosed with MS.

In that moment, looking back, it all started to make sense as the final diagnosis wasn’t Crohn’s, psychosomatic or any of the other diseases for all these years. I shared a poignant moment with my wife, in which I said – almost surprised – “I wasn’t making it up.” She looked at me and explained she never thought I was. Sadly, at that point I had been told certain false truths enough times by clinicians that I had started to believe it was all in my mind.

“I thought at first it was just stress”

Adrian Nelson changed his hectic career when he was diagnosed

I was a young enthusiastic company director in 2008, driving 200 miles most days from my home in the East Midlands to customers in the West. The recession was biting, and our customers were starting to have difficult conversations about their feasibility.

It was a most difficult time. So, it is of little surprise perhaps that when my right hand stopped working and I was having difficulty communicating, my thoughts fell to it being caused by stress. Needless to say, after six months of tests, a house move and the folding of the business… it wasn’t stress! By the time I sat in front of the neurologist I’d already self-diagnosed, so I was prepared to learn that MS was the cause of my symptoms.

That was the end of that career. But can someone really be good for nothing at the age of 25? It turns out no, but there are caveats! I think it’s fair to say that there’s a ‘me before’ and a ‘me after’ diagnosis. The me before handled stress, worked like a Trojan and drank too much. Now, the new me doesn’t drink, has a healthier relationship with work and avoids stress at all costs!

“I let her know if she wanted to leave, I’d totally understand”

Anji Vadgama Silva had just married and returned from honeymoon when she was diagnosed with MS

I was diagnosed with multiple sclerosis (MS) in February 2019 by a neurologist. I had pain in my right eye, which I now know is optic neuritis, as well as black-outs and pins and needles in the whole of my left side, but especially in my legs.

All of this and the diagnosis came when my wife Asha and I just got back from our honeymoon – we’d got married that year. Of course, it was a huge shock to me, but it was also a shock for Asha. She didn’t sign up for this.

I felt bad about this, and I let her know that if she wanted to leave, I understood. But she said she’s always going to be here for me. Asha is a very strong and independent lady, and I don’t know where I would be without her.

I was working for a recruitment agency who have been fantastic through the process of my diagnosis and gave me the time off that I needed for treatment. Every day is different, and we take it a day at a time.

“I found myself struggling through the shock of a divorce”

Joan Due-Gundersen can pinpoint the stress of emotional upheaval as a possible trigger for her MS

Before I developed MS I was living in Scotland, where I was born in 1950. I married a Norwegian, had two children and then we moved to Norway in 1984. I live in the capital Oslo, which has a population of around 5.5 million people.

Six years later, I found myself struggling through the shock of a divorce and having to live in another country as a single mum. I believe the stress of all of this contributed to the development of multiple sclerosis, the symptoms of which I started to experience about 10 years later.

My symptoms were heavy legs, foot drop and general physical weakness. I put it down to a lack of strength and signed up with a personal trainer at the local gym. Two years later I felt worse and I went on to get a primary progressive multiple sclerosis (PPMS) diagnosis in 2007. Three or four years Iater I had to leave my job as a training and development manager and started receiving a pension you get here for leaving work because of accidents or chronic illness.

It seems there are many similarities between the UK and Norway as far as MS care goes, but one big difference is here, there are no monthly disability payments. Everything is provided for us instead, but we can’t choose what to spend the money on.

“My family thought it was all in my head”

Jess Lambert, 37, had five children at the time of diagnosis 

I was officially diagnosed with multiple sclerosis (MS) in August 2017 when I was 30. I had five children when I was diagnosed.

I had my first symptoms in 2004 when I was admitted to hospital for two weeks. Doctors thought I’d had a brain haemorrhage, but after many tests it turned out to be optic neuritis. I was told it was an isolated incident.

Throughout my 20s I kept going to the doctors for numb toes and tingling fingers and my legs going weak but, of course, the GP was blaming the symptoms on me needing to lose weight.

It was very frustrating because my family thought it was all in my head, and I was being a hypochondriac. Eventually, I turned 30 and my legs went weak, and I had to use a wheelchair. I then had an MRI scan and doctors confirmed I had relapsing remitting MS.

I went from being able to share a bed with my husband to needing a hospital bed and being in a small bedroom on my own feeling isolated. It affected my relationships and my self-esteem. It took a long time for my children for come to terms with MS and its challenges. I still do not think that they have fully come to terms with it, but on a day-to-day basis we get by with a sense of humour. I think is very important to be able to laugh at yourself with others.

Our peer support service helps people at all stages of their MS journey to connect with others with the same condition, providing friendship and support to those who could otherwise feel isolated. By donating to BigGive campaign you can double your donation, and make twice the difference! Click here to find out more!