‘My £43,000 stem cell therapy in Mexico has transformed me’: MS left BBC war correspondent Caroline Wyatt struggling to walk or even think clearly, but now she has hope
Last month, something extraordinary happened: I woke up feeling well.
It might sound simple, but it’s something that multiple sclerosis has prevented me feeling for a long time.
Though it was diagnosed only in 2015, I’ve had the condition for 25 years.
Increasingly, my legs had felt like lead weights and by the end of last year I was walking with a stick.
My hands and arms were weak, my brain would not fire as I wanted and I woke up every day with a menacing cloud of exhaustion.
Even my voice and eyesight had been affected: on occasions I woke up seeing double, and in December I realised I was no longer safe to drive.
MS is the result of your immune system attacking the fatty sheaths around the nerves that relay messages between the brain and body.
Ultimately, this can lead to lesions and damage in the nerves themselves even in the brain and eyes.
Over the past two years I’ve tried various drugs to slow down the damage to the fatty sheaths, but none have worked.
But last month, the brain fog that normally muddles my train of thought, the nerve pain in my fingers and toes, the tinnitus that rages through my ears, the migraines that have plagued me — all had significantly improved.
Stranger still was that my improvement came within hours of my fourth round of chemotherapy, the treatment that was the first step in my stem cell treatment that I hope will halt my MS.
It’s not been an easy undertaking, involving a month-long trip to Mexico and tens of thousands of pounds.
Yet I had no desire to end up in a wheelchair or to give up my job at the BBC, and the disease has been progressing at such a frightening rate that this was looking increasingly possible.
The point that I thought ‘no more’ came last May at the National Hospital for Neurology in London, where a friendly NHS nurse was testing my worsening bladder function.
As I left, she said when I came back, she could teach me how to put a catheter in if my bladder function deteriorated further. That was it. I had to act fast.
I had seen my colleague Fergus Walsh’s Panorama programme in January last year on the remarkable results of trials being carried out at the Royal Hallamshire Hospital in Sheffield, using autologous haematopoietic stem-cell transplants (HSCT) — stem cells from the patients themselves.
Some had regained their ability to walk, talk and work again.
First, the faulty immune system is destroyed with chemotherapy, then a new immune system is built using the stem cells, which can turn into all kinds of cells, including immune cells.
Fergus put me in touch with the Sheffield team, but after tests I was told I was not a good candidate: my brain scans had shown no inflammation around the many lesions, one of their main criteria for acceptance.
Logically, I understood that, but I was devastated.
I joined several Facebook groups for MS patients wishing to have HSCT and found out about global centres of excellence in Chicago and Mexico.
There were stem cell ‘veterans’ whose treatment appeared to have sent their MS into remission.
Doctors hesitate to use the word ‘cured’, as some patients can later relapse, but this certainly looked to me to be the closest thing yet to a cure for MS.
Yet a GP I saw for a blood test told me it was untested and warned against it.
My neurologist was sceptical, though once he’d read up on it, said he thought it ‘interesting’.
As I saw it, I had nothing to lose. So in December, I emailed Clinica Ruiz in Puebla in Mexico.
I was talking to my bank about a loan to raise the £43,000 cost when the June 2017 date the clinic had offered for my transplant suddenly became January 1, 2017, after another patient cancelled.
My parents and friends helped me raise the funds — I also needed £4,000 for a carer or nurse to stay with me during out-patient treatment, plus air fares and £6,000 for Rituximab, a lab-made antibody I’d need to kill off any rogue immune cells.
But the treatment was cheaper than the £120,000 fee in Chicago or the £80,000 to £100,000 it might cost to have HSCT privately in the UK, something that’s become possible only this year.
Flying out to Mexico on New Year’s Eve with my brother, Simon, I felt hope and fear in equal measure. We were collected by Angel, a clinic driver, and my nurse, Joy.
But I was confident I’d done my research.
The clinic’s results spoke for themselves: in a peer-reviewed medical study, almost 50 per cent of patients had the progress of their disease halted by HSCT, while another 20-25 per cent saw a reversal in some of the damage done by the disease.
There were possible side-effects: you are initially at a heightened risk of infection while your immune system redevelops, the treatment can lead to thyroid problems and it raises the risk of cancer.
But I feared the advance of my MS more than any of these.
I also knew I might fall into the 20 per cent or so who see no benefit, or who feel better only temporarily before the disease returns — and the treatment was most effective at an early stage. I did wonder if I had left it too late.
Two days after arriving, I sat with Joy as the chemotherapy drug dripped into my veins. I was sick during that and each of the following three courses, despite anti-nausea drugs.
Every morning, the doctor or nurse would inject filgrastim, the mobilising agent that would encourage the stem cells to move from my bone marrow into the bloodstream to be harvested.
I also had to take anti-virals, antibiotics and steroids daily to assist the immune system.
Despite the rigours of the treatment, I had rarely felt so well as I did straight after those sessions.
No one could explain why this might be, though for the first time in 25 years my immune system was no longer attacking my nerves.
At 11.30am on Saturday, January 14, I received the stem cells over the course of an hour.
Every second the ruby fluid seeped into my veins felt like a rebirth. That night, back at the flat, I stood on the roof terrace and wept tears of joy.
For the first time in a long time I had hope. Hope of a future that did not involve a wheelchair, or giving up the job I loved.
We were all carefully monitored for neutropaenia — insufficient white blood cells to fight off infections — and had an appointment with the haematologist to see how our new cells were faring.
During that time, everything had to be sanitised and all food well-cooked to avoid poisoning, while trips out of the flat were restricted to going to the clinic while wearing masks.
Tony, the driver, cleaned every inch of the inside of the van before collecting us each morning.
By the day I left, almost a month later, I already felt very different from the patient who had arrived.
For the first week back at home, I was a sloth, sleeping off jet lag.
The second week brought improvements to my balance and strength, while the third week saw me able to walk three kilometres without a stick.
It was amazing to be able to walk that far again without my legs feeling as though they were dragging concrete bollards, and without fear of falling over.
By week four, I was able to do yoga and noticed the blurriness in my left eye was receding. I hadn’t felt so upbeat — and hopeful — for so long, it was wonderful.
But the past week has proved more challenging. Over the weekend, I could feel my body trying to fight off a virus.
In Puebla, the clinic’s doctors were only a phone call away.
Here, my supportive GP is nearby, but because I chose to have my treatment abroad and am having an antibody treatment not approved by NICE, I have it at a private hospital every two months.
And there are moments of doubt, too. With every tingle along a nerve, I wonder if the MS is returning.
But Dr Ruiz told me to expect the main benefits around the end of the year, so I must be patient.
And whatever happens, I am happy to have tried HSCT. The hope I feel about my future is in stark contrast to my despair last May.
Now, I can dream of having enough energy and clarity of mind not only to work but perhaps even to dance, write a book, laugh and travel once more.
At 49, there’s still so much I would like to do.