I saw this on The Mail Online & thought it would interest many of you who like me, have been suffering for years with a chronic illness while wondering if I have the correct diagnosis.
A mother-of-two from north London suffered for years with bouts of unexplained paralysis and weakness before she was diagnosed with multiple sclerosis (MS).
Fiona Elias, 34, first realised something was wrong when, at the age of 17, she woke up one morning unable to move.
This began a search for answers which took more than ten years during which she was called a hypochondriac because medics could not figure out the problem. But after a relapse when she was pregnant with her youngest daughter Nava in 2016, Ms Elias had her MS diagnosis confirmed.
During relapses the condition can leave her exhausted, struggling to balance, with numbness in her legs and periods of temporary paralysis.
Ms Elias is now trying to raise £50,000 for a pioneering stem cell treatment and chemotherapy in Russia which she says could help her body to ‘forget’ the MS.
Ms Elias, who works for a social care charity and lives in Edgware in London, says multiple sclerosis makes her ‘struggle to function on every level’.
Mother of Nava, two, and Orli, six, she has suffered with the condition on-and-off since she was 17 years old and may end up using a wheelchair full-time if she cannot do something to relieve her symptoms.
Ms Elias explained: ‘Relapses come from absolutely nowhere. There’s no warning whatsoever.
Every morning, I wake up not knowing if I’ll be able to move, which is obviously very difficult with two small kids.
‘At my worst, I’ll experience total weakness. Even standing up for long enough to have a shower seems impossible.
‘I also have brain fog and can’t think properly. It’s like my brain has been replaced by a giant fuzzy sponge.
‘I struggle to function on every level. Every time I relapse, there is more irreversible damage done to my nervous system.’
As well as debilitating fatigue, Ms Elias experiences balance issues, numbness and tingling in her legs, foot drop in her left leg – which leaves her requiring a brace, spasms and periods of temporary paralysis.
Due to the uncertain nature of the condition she is unable to get an exact prognosis, but has been warned she may require a wheelchair full time in the future.
Ms Elias did not start taking medication until her diagnosis was confirmed by a doctor in England, despite an Israeli doctor telling her she had MS 10 years earlier. The condition causes the immune system to attack the body and damage nerves in the brain and spinal cord.
MS is incurable and a lifelong chronic condition which affects around 100,000 people in the UK and 2.3 million worldwide.
After Ms Elias’s first attack when she was 17 – 17 years ago – she went to hospital but doctors’ tests did not reveal what was wrong with her.
She said: ‘Out of nowhere, I was super poorly. I was so fatigued and could barely move my legs.’
Eventually, Ms Elias was so sick she had to drop out of school and, over the next year, tried a variety of treatments – including physiotherapy and hydrotherapy – to help rebuild her strength.
But baffled medics still failed to pinpoint the cause of her sudden decline.
‘At one point, it was suggested I was a hypochondriac, or that this was all in my head, which was incredibly frustrating,’ she said.
A hypochondriac is someone who obsesses over symptoms and thinks small problems are a sign of a serious medical issue.
‘Eventually, I got a diagnosis of chronic fatigue syndrome, but that felt to me like they were clutching at straws and didn’t know what else to say,’ Ms Elias added.
Still struggling, she returned to school, largely relying on a wheelchair to get around. Gradually, she began to feel well more often, which meant she could go to university. But, during a year out studying in Israel in 2006, she relapsed.
‘Luckily, I had travel insurance, so I went to see a neurologist out there and was diagnosed with MS,’ she said. That was the first time the condition had ever been mentioned to me. ‘I felt such an array of emotions. On one hand, after all this time it was finally being validated that something was wrong.
‘It wasn’t all in my head and I no longer had a big unknown hanging over me. ‘But on the other, I was only young, on my own and away from home.’
Heading back to the UK, Ms Elias sought confirmation of her diagnosis – but, when they ran tests, medics were unable to find enough evidence to give her any definite answers.
Exasperated, she tried to manage her symptoms and get on with her life. Then, while pregnant with her youngest daughter, Nava in 2016, she relapsed once again.
I’d been deteriorating throughout my pregnancy,’ she said. ‘By then I’d moved from Essex to London, so I saw a different set of doctors, and was referred to the neurological team at the Royal Free Hospital in Hampstead. ‘They did as many tests as they could, but they wanted to do an MRI scan after I’d given birth. ‘I eventually had it and went back for the results, expecting it to be all clear. Instead, the doctor told me I definitely had MS.’
Her diagnosis finally confirmed, Ms Elias had to wait until she had finished breastfeeding before she could start taking medication in the form of three daily injections of disease modifying drugs.
While her symptoms persisted, it was hoped the drugs would at least prevent a relapse. But, in March 2018, she relapsed once again, prompting doctors to change the type of medication. Now she is determined to fight back against the disease and is trying to crowdfund a stem cell transplant which will cost £50,000 at a hospital in Moscow.
‘Right now, I use the analogy that my brain is like a broken phone charger,’ she said. ‘The protective casing – or myelin – is damaged, so it’s not connecting and carrying electrical signals properly. This treatment would essentially reboot my immune system. My stem cells are harvested, then I have a week of intensive chemo to completely wipe my immune system. Then, when the stem cells are put back in again, it’s almost as if my body will forget I have MS.’
According to the MS Society, the haematopoietic stem cell transplantation (HSCT) procedure – which is currently unavailable on the NHS – works by administering a low dose of chemotherapy to encourage stem cells to move from the bone marrow into the blood.
Then, when there are sufficient cells in the blood, they are removed and stored, while a more intense form of chemotherapy is given to wipe out the immune system.
Finally, the stem cells are transplanted back into the blood, once the chemotherapy drugs have left the system. Many patients are kept in isolation for the month-long treatment, to avoid having their immune systems compromised.
Ms Elias said: ‘I see HSCT as my best chance. If it works, it’ll eliminate the threat of needing a wheelchair and get rid of that fear hanging over me. I won’t have to worry about standing up and making it through the day. I can put the kids to bed or take them on days out without being absolutely on my knees with fatigue. I’ve spoken to people who’ve had great success with HSCT. Some have even seen the lesions in their brains shrink.’
‘It’s been a great help to talk to other people living with MS – especially people willing to try innovative treatments – as it shows me I’m not alone.’
To donate, visit Ms Elias’s GoFundMe page.
By Sam Blanchard for Mail Online
What is multiple sclerosis?
Multiple sclerosis, known as MS, is a condition in which the immune system attacks the body and causes nerve damage to the brain and spinal cord.
It is an incurable, lifelong condition which ranges from producing fairly mild symptoms to causing severe disability.
Around 100,000 people are thought to be diagnosed with MS in the UK, and around 2.3 million worldwide.
It is more than twice as common in women as it is in men and is usually diagnosed in their 20s and 30s.
Symptoms include fatigue, difficulty walking, vision problems, bladder problems, numbness or tingling, muscle stiffness and spasms, problems with balance and co-ordination, and problems with thinking, learning and planning.
The majority of sufferers will have episodes of symptoms which go away and come back, while some have ones which get gradually worse over time.
Symptoms can be managed with medication and therapy, but the condition shortens the average life expectancy by around five to 10 years.
Source: NHS Choices