‘I thought I had overdone things at London Marathon ... but I had MS’
AMARATHON runner brushed off the moment when her “legs turned to jelly” after a hard run.
Hannah Webster, 41, blamed the searing heat and the hard London Marathon for her problems.
She suffered symptoms for three years from bad headaches, bladder problems to losing the vision in one of her eyes.
“My world completely changed,” she said. “The problems were getting worse and worse, it was terrifying. It was mainly the legs, it was like having drunk legs, swerving back and forth.
“I was on the London Marathon three years ago and it was a really hot one. I was stubborn and had to finish it. I noticed the problems at 16 miles, my husband, Neil, said, ‘You didn’t look good at all’.
“It all came crashing down – I had optical neuritis and lost vision in my left eye.”
She added: “I had bladder issues. I ignored the issues for three years, I look back and think that is why that happened.
“I always had a really good memory but now I go upstairs and I can’t remember what I have gone upstairs for.”
Hannah, who lives in Manorbier in Pembrokeshire, thought the stress of her former PR job was the cause, but was left stunned by the bombshell diagnosis that she has multiple sclerosis (MS). “I had a highly stressful job in PR, I was always a million miles per hour and would fit in fitness in between,” she said.
“I have done 11 marathons, and when I noticed my legs were like jelly three years ago they put it down to stress as they then went back to normal after a hard workout in the gym.
“I would be in the gym at 6am and be in London for 9am or I would be in the office in Germany for the day.”
She added: “I would go to the doctor and they would give me injections and I would be fine.
“I asked the doctor if I had MS and he said it was ‘extremely unlikely’.
“I did lots of races after the London Marathon, and I felt so bad in one of the races that I did in October 2019 that the running club was worried about me.
“I went back for a diagnosis as through my work I had health insurance and the physio referred me to a neurologist and found lesions that were MS.
“I was 40 when I was diagnosed. “I was in major denial and I was on a different planet for about a month.”
Hannah, who started running at 11, has been forced to change the pace of her life along with her career. It led her to become a freelance writer as she switched paths.
She said: “I was in major denial about MS and I was on a different planet for about a month.
“I do far too much but I realise I have got a battery life, if I use it all in the morning by walking the dog I will be rubbish in the afternoon.
“I go through stages of accepting it.
“I try to do everything in the gym but you should not compare yourself to how you were – you have to mourn your previous self to get on with life.
“I’m worried that I will gradually get worse and end up in a wheelchair.
“I want to get on with things and get new treatment.”
Hannah is currently undergoing treatment, which costs £90,000 a year, to slow the progression of the illness but wants to be offered the option to have one-off £50,000 treatment that could potentially be lifesaving.
New guidance from Health Technology Wales (HTW) recommends some patients should be considered for an alternative treatment called AHSCT (Autologous Haematopoietic Stem Cell Transplantation).
But they can only be offered the drug if they have been treated with disease-modifying therapies (DMTs) and still have recurring symptoms.
The intensive procedure relies on chemotherapy to get rid of the immune cells which attack the brain and spinal cord of MS patients.
It also reboots a person’s immune system by relying on the patient’s own stem cells that have been harvested.
The treatment is said to be a more effective form of treatment.
She said her inability to run as she once did was a real challenge for her.
Hannah said: “It stresses me out that I can’t run anymore, my balance is just rubbish. The fatigue is awful, I have to chill for an hour.
“I want £50,000 one-off treatment rather than one that costs £90,000 a year.
“Lots of people are going to Mexico and Russia to have it but there are two hospitals in London and the UK who do it – one in London and the other in Sheffield.
“It’s like a chemo treatment and they are resetting your immune system – it’s like having a new immune system.”
She added: “It could change my life and I would prefer to have it done in the UK.
“I would possibly go abroad if I could do it but preferably I will be treated in the UK.
“It’s quite a common age to be diagnosed with it between 30 and 40 and is common in women and girls.”
In Wales, there are 5,600 MS patients – with a total of 230 new cases a year.
But Hannah refuses to be deterred by her condition and is in the running for taking on a new challenge next month.
She said: “I am doing a 50k in May for the MS Society but I was thinking it was not challenging enough.”
Hannah said there was no real reason pinpointing as to why she ended up being diagnosed with MS.
She added: “There’s nothing that makes sense. Some said they had glandular fever as a child.
“It’s very annoying.”
But she refuses to let life hold her back and is now competing in the disabled category instead.
“I was No.1 in the Cross Fit Open – I did the adaptive category and came eighth globally – first in Europe and first in the UK.
“I’ve also been put into the disabled category of the WheelWOD Games in June, where I will be doing pull-ups and step-ups.”
The treatment is now on offer from NHS Wales after Health Technology Wales’ (HTW) guidance was issued last July.
Chairman Professor Peter Groves said: “We found that the clinical evidence supports the benefit of this treatment for selected patients as compared with conventional drugs and our detailed analysis of the costs involved shows that in these individuals this treatment is a very efficient use of healthcare resources.”
Commissioners at the Welsh Health Specialised Services Committee (WHSCC) have pledged to support its funding within NHS Wales.
Andrew Champion, an assistant director at WHSCC, said: “We recognised the existing eligibility criteria and evidence base for this treatment was unclear and out of date, so we asked HTW for guidance.
“The technology appraisal that HTW undertook enabled WHSCC to come to a much better-informed decision on commissioning the treatment.
“In the future, as a result, we expect more patients to access this highly clinically and cost-effective treatment option, thus improving their survival and quality of life.”