Please login to the form below

My MS journey: one patient's search for innovation

David Lazarus charts his journey from initial MS diagnosis in 1990 to his experience participating in innovative clinical trials, along with his advice for other patients.


Image credit: 
Freepik / Designed by rawpixel.com

I was diagnosed with multiple sclerosis (MS) in 1990. I remember it exactly. I had been playing squash and I kept missing the ball. I wasn’t a brilliant player, but I realised something wasn’t right with my eyesight. It was just feeling… I wasn’t saying I couldn’t see ... I was just missing the ball playing squash.

It took some time to transition from seeing my usual high street optician to an appointment with a specialist in Harley Street. Eventually I was referred to Guy’s and St Thomas’ hospital, where the doctor advised a lumbar puncture. I remember thinking, ‘It’s only my eyesight – I don’t want to delve that deeply.’

Then I went to National Hospital for Neurology and Neurosurgery, which is part of University College London Hospitals Trust (UCH), where I had an MRI. The doctor said, ‘you’ve got symptoms concurrent with MS’ and that’s the point life falls apart. It then took about another six months or so before I had the first relapse.

Your best friend is your consultant

When I was diagnosed 30 years ago, MS was treated quite differently. You had a consultant and they gave you steroids. There wasn’t really a lot else. Intravenous treatment for MS didn’t exist in my day. However, the MS landscape has changed a lot since then – there is much higher awareness. Nowadays, you have a variety of treatment options for the earlier stages of relapsing and remitting MS.

There is so much information out there and it can feel quite overwhelming to start with. Sometimes a friend will phone up and ask if I’ll speak to somebody who’s just been diagnosed. I tell everyone, ‘your best friend is your consultant and, aside from that, you’ve got to keep yourself as healthy as possible.’

"You don’t often wake up feeling great. I can usually guess why I’m having a particularly bad day, but if I’m having a good day, I have no idea why I’m okay"

The best piece of advice I can give other patients is to get reffered to a consultant at a centre of excellence. It’s so important to go to a neurological hospital or a hospital that has a neurological department, which is taking the disease seriously. The doctors there can refer you for clinical trials and then you have the option to participate in the latest treatments.

As a patient, you also need to try and help yourself. Do the research, don’t miss appointments, look after yourself, do exercise. I exercise three times a week with pilates, which is not too difficult and can work at your level of ability.

There are also alternative options. I have acupuncture, I see an osteopath, I also take homeopathic remedies and vitamins every day. I’m not a doctor and I can only speak from my personal experience, but I find these treatments really useful. Most importantly, make sure to be engaged with the research.

One patient, one hundred doctors

When you have MS, it can feel like every part of your body is going wrong. You can wake up in the morning and feel like rubbish or feel not quite as rubbish. You don’t often wake up feeling great. I can usually guess why I’m having a particularly bad day, but if I’m having a good day, I have no idea why I’m okay.

Due to the variety of symptoms that can present in MS, patients see lots of different doctors in lots of different clinics. There is a layer of specialism in the UK National Health Service (NHS). If you have a particular issue, you can tell your primary consultant and they’ll refer you on. I only have good things to say about the NHS.

"We didn’t know what was going to happen. The doctors were worried the stem cells would roll up into tumours"

Aside from seeing a neurologist, I’ve also been to a chronic pain clinic. The doctors gave me injections and showed me different techniques for dealing with the pain. I’ve also seen a neuro-urologist who deals with bladder problems. The problem is, each specialist may give you a drug which can have unpleasant side effects, causing another layer of challenges.

MS nurses are really important. Often it takes six months to get an appointment with a consultant and it’s best to speak to someone quickly if you’re having a relapse. The MS nurses are really helpful for answering queries, for example how to deal with a specific issue, because in MS, you could wake up tomorrow with a brand-new symptom.

25th June 2019

Share

Tags

Company Details

Blue Latitude Health

+44 203 328 1840

Contact Website

Address:
Blue Latitude Health (UK)
140 Aldersgate Street
London
EC1A 4HY
United Kingdom

Latest content on this profile

Fishawack Health, a new breed of global commercialization partner, fit for a post pandemic world
Our parent company, Fishawack Health has reorganized to deliver agile and innovative solutions for life-sciences companies in the face of rapidly changing markets
Blue Latitude Health
In the precision medicine era, the line between products and services is blurred
Precision and personalised medicines are more than products, they are services in their own right. So, how should pharma approach this uncharted territory to ensure targeted therapies work for patients?
Blue Latitude Health
Understanding COVID-19 and varying responses across the globe
At the beginning of the COVID-19 Pandemic, Senior Account Executive Lauren Fernandes took a course at the London School of Hygiene and Tropical Medicine to better understand how the global response to the virus and to ensure we were best positioned to serve our clients during this challenging time. She shares the key learnings and why understanding the epidemiology of the disease is integral for fighting it.
Blue Latitude Health
Top 5 tips for a multi-indication product launch
Senior Associate Consultant Sana Rahim and Senior Consultant Victoria Clark explain the lessons the team has learned from launching six different indications of an oncology product in an accelerated timeframe.
Blue Latitude Health
If our patients are diverse, why are clinical trials so white?
Despite facing worse health outcomes, minority populations are often left out of clinical trials and miss the opportunity to participate in life-saving research. Associate Consultant Ling Song explores this issue and calls for the pharmaceutical industry to change its approach.
Blue Latitude Health
Engaging physicians during COVID-19
COVID-19 has drastically changed the lives of healthcare professionals. They are emotionally and physically drained and under huge amounts of pressure. They also need pharma’s help. Senior Consultant Pany Koizi outlines five principles for engaging with physicians during the pandemic.
Blue Latitude Health