My MS journey: one patient's search for innovation

Guest Blogger|18th April 2019

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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.

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