Multiple Sclerosis: ‘It’s the fear of the unknown of what it might bring’

It took two years to find out why James Bishop was getting headaches, feeling dizzy, having urinary problems and countless falls.

At first, the 38-year-old’s scans and tests were coming back clear, but it was evident in 2018, James says, that something was not right. “It wasn’t until the end of 2019 when my symptoms started to get worse and my balance started going... I fell down the stairs. I went back to the GP then and said we need to do something here.”

Following repeat scans and a referral to Dr Paul Crowley in UPMC Aut Even Hospital in Kilkenny, James was diagnosed with Multiple Sclerosis (MS) in July, 2020.

MS is an incurable disease that affects your brain and nervous system by attacking the myelin sheath around your nerves. Damage to this protective layer disrupts the flow of information between the brain and the body and within the brain.

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“I have fallen so many times. I fallen in town, I’ve fallen in front of people. It’s just so embarrassing... it has got to the stage now where if we’re going out, I have to plan

There are three types; relapsing-remitting MS (RRMS), secondary progressive MS (SPMS) and primary progressive MS (PPMS). Classification depends on the severity and progression of the disease so doctors watch how patients respond to treatment and how their symptoms evolve.

James says his reaction to his diagnosis was mixed. “I knew something was up, but when we actually got [the diagnosis] it was a shock. Initially it was like right we have a label on it... but then it was like oh, f**k.”

“It’s the fear of the unknown of what it might bring.”

James’s wife Leanne, who has a nursing background, says she initially met the news with the same professionalism she relied on when she was nursing. “I was like ‘right, thanks, doctor’. Very focused... It was probably my way of coping with it at the time. I turned into a nurse, not a wife... It wasn’t until maybe a year later that it really sunk in... where I really felt angry and upset.”

The couple, who have two children aged seven and four years old, say it has had a big impact on their lives. The carefree aspect is gone.

James also says there is an embarrassing side to many of his symptoms. “I have fallen so many times. I’ve fallen in town, I’ve fallen in front of people. It’s just so embarrassing... it has got to the stage now where if we’re going out, I have to plan.”

Before James goes anywhere he has to manually empty his bladder through a catheter, which has to happen at least three times a day. Pointing to an energy drink which James says he needs to drink to help him to fight the fatigue and stay awake: “I know if I want to go anywhere I have to wait at least one to two hours for that to pass through my system so I can empty the catheter for me to be able to go out comfortably for a couple of hours.”

“If we go out now and Leanne asks me if I want a cup of coffee, I’m like ‘no, I cant’. It’s deeply frustrating.”

“You can get so angry,” says Leanne. “We have to plan our trips, we can’t go anywhere where James might have to walk around for ages and Ireland isn’t hugely accessible for people with disabilities.”

Leanne also says that while planning is essential, it’s tough because they can never predict how James will feel from one day to the next. “He could wake up feeling fine, though he doesn’t really any more, those days where he could have, he’ll be fine and then by two or three o’clock he has to go to bed.”

“There are some days where I could wake up and feel relatively okay... I feel like I might do a bit of work after I drop the kids off, I might throw on a bit of washing, then by the time I pick up the kids, my energy is gone up or... maybe it will last the whole day, but then the next day I’ll be in bed. It’s so deceiving,” James says.

Right now, everything is a struggle, I can’t make it through the day without needing a sleep, I use a stick, I fall a lot, and I can’t walk more than 200m

One of the main treatments in Ireland for MS is infusion therapy, which relieves symptoms for longer periods of time by distributing medicine directly into your bloodstream. While the treatment is not a cure, it is meant to slow the progress and act to reduce the number and severity of MS relapses.

Since his initial diagnosis occurred during the pandemic, Dr Crowley was hesitant to put James on infusion therapy immediately and instead started him on oral medication for seven months. However, James says he did not react well to the drugs and his symptoms worsened.

He was then started on infusions and has been receiving them, along with steroids, every six months.

After monitoring the progression of his symptoms, James was diagnosed with primary progressive MS in October 2021. This form of the disease is characterised by symptoms which gradually worsen and accumulate over several years. There are no periods of remission, though some people have periods where their condition appears to stabilise.

Unfortunately, the infusion therapy did little to help James’s worsening symptoms.

As MS treatment is limited in Ireland, the couple began looking further afield for treatment. After extensive research, they came across hematopoietic stem cell transplantation therapy (HSCT) in the UK through the NHS. HSCT is an intense chemotherapy treatment. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells or a donor’s.

This treatment is available in Ireland, but it is currently not given to patients with MS.

The MS Society in the UK says “HSCT has proven to be very effective for people with highly active MS”, but it also warns that the HSCT procedure “can cause hair loss, fever, nausea and infertility. Your risk of infections in the future also increases.” It also warns that some people have died as a result of HSCT.

James was unsuccessful in his application for treatment through the NHS due to the progression of his illness. However, the father of two came across a similar therapy being offered by a clinic in Russia through a person in work. Autologous hematopoietic cell transplantation (AHSCT) also uses the person’s own stem cells.

To be able to have the energy and ability to play with my kids and make happy memories with them and my wife is my main goal – anything else is a bonus

The clinic, which is based in Moscow, claims 75 per cent of patients with progressive-primary MS experience “event-free survival rate” which means the disease is halted from progressing further. According to the clinic’s website, more than 2,500 Irish patients have undergone treatment there.

James was accepted to programme with a starting date of February 2023, but the treatment will cost €65,000.

There is also, of course, the fact this is not an ideal time to be visiting the Russian capital. Because of Russia’s invasion of Ukraine, flights to Moscow have been severely cut back – with connections via India or Turkey being the only possible options.

Knowing they would never be able to afford that kind of money, the family have started a campaign to help raise funds for the treatment. If successful, he will fly over for treatment over the course of a month before flying home where he will have to isolate for three months as his immune system rebuilds itself.

Without the treatment, doctors say James’s condition will continue to deteriorate and he will need more and more nursing care. “Having this treatment is my only hope of maintaining some quality of life and getting to enjoy things that most of us take for granted,” James says.

“Right now, everything is a struggle, I can’t make it through the day without needing a sleep, I use a stick, I fall a lot, and I can’t walk more than 200 metres. Every outing must be planned and our home is fast resembling a hospital storeroom. Above all else, to be able to have the energy and ability to play with my kids and make happy memories with them and my wife is my main goal – anything else is a bonus.”

The couple say the support they have received so far has been “surreal”.

“We can’t get over the response so far. People have been amazing.”

“It restores your faith in people,” says Leanne.