/Mother battles crippling MS that went undetected for a decade

Mother battles crippling MS that went undetected for a decade

A mother-of-two’s crippling multiple sclerosis went undetected for a decade after she dismissed it as just a pulled muscle.

Maggie Conner was diagnosed with the debilitating condition in 2013 at 29 but believes she first experienced symptoms at just 19 after she collapsed in a nightclub, which made others think she was ‘high’.

The now 35-year-old, from Cruden Bay, Aberdeenshire, only discovered she had the disorder while undergoing IVF to conceive her four-year-old daughter Megan.

Despite doctors reassuring the former business manager it would be 20 years before her symptoms became severe, she is already forced to rely on a wheelchair to get about and rarely leaves the house.

Terrified her children will one day become her carers, Mrs Conner is fundraising £50,000 for a stem-cell transplant in Mexico, which she claims the NHS will not give her due to her MS being too severe. 

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Maggie Conner's Maggie Conn

Maggie Conner's Maggie Conn

Maggie Conner’s crippling multiple sclerosis went undetected for more than a decade after she dismissed it as a pulled muscle. Pictured with her daughters Megan (left) and Leah (right), the 35-year-old now relies on a wheelchair to get about and rarely leaves the house 

Pictured in 2009 at her brothers' 1920s themed wedding, Mrs Conner used to be the life and soul of the party. She was finally diagnosed in 2013 after years of collapsing, and enduring pain in her back and wrists. Mrs Conner thought she had pulled a muscle while working in a shop

Pictured in 2009 at her brothers' 1920s themed wedding, Mrs Conner used to be the life and soul of the party. She was finally diagnosed in 2013 after years of collapsing, and enduring pain in her back and wrists. Mrs Conner thought she had pulled a muscle while working in a shop

Pictured in 2009 at her brothers’ 1920s themed wedding, Mrs Conner used to be the life and soul of the party. She was finally diagnosed in 2013 after years of collapsing, and enduring pain in her back and wrists. Mrs Conner thought she had pulled a muscle while working in a shop

Mrs Conner, who lives with her children and husband Paul, said: ‘I feel trapped inside myself. It’s difficult to spend time with my kids and not to be physically capable of playing with them or doing anything with them.

‘I can’t do what I used to do, it feels like I’m in the way all the time.

‘It’s an everyday obstacle in allowing me to be a proper mum and the mum my children deserve.’

After collapsing in a nightclub in the late 1990s, Mrs Conner went on to experience falls throughout her twenties, which would often cause her to burn her hands on the hob. 

‘When I was 19 I collapsed in a club, everyone thought I was on drugs, I reckon that was the first sign that something went was wrong,’ she said.

‘There were lots of little signs like bad back pains and weak wrists. It was one thing after another.

‘I was a manager of a busy shop and spent my life working, so I just thought it was a pulled muscle.

‘It was really horrible. I was always having falls and burning myself.’

Mrs Conner’s sister, Gwen Marcar, 40, added: ‘There were definitely symptoms of her condition but just none of us noticed it.’ 

Things then took a turn for the worse in 2011 when Mrs Conner woke with numbness in both her feet and legs.  

Mrs Conner worries her daughters, who she describes as 'miracles', will one day become her carers. She was diagnosed while undergoing IVF to conceive Megan (right)

Mrs Conner worries her daughters, who she describes as 'miracles', will one day become her carers. She was diagnosed while undergoing IVF to conceive Megan (right)

Mrs Conner worries her daughters, who she describes as ‘miracles’, will one day become her carers. She was diagnosed while undergoing IVF to conceive Megan (right)

Mrs Conner is pictured at a family Christmas gathering in Peterhead in 2009. Her sister Gwen Marcar admits there were always signs she was suffering but no one took it all that seriously 

Mrs Conner is pictured at a family Christmas gathering in Peterhead in 2009. Her sister Gwen Marcar admits there were always signs she was suffering but no one took it all that seriously 

Mrs Conner is pictured at a family Christmas gathering in Peterhead in 2009. Her sister Gwen Marcar admits there were always signs she was suffering but no one took it all that seriously 

Despite doctors reassuring Mrs Conner at the time of her diagnosis she would unlikely experience symptoms for 20 years, she already feels 'trapped' in her own body. She is pictured with Megan (right) and Leah on May 21 2015. Mrs Conner tries to stay upbeat for her children 

Despite doctors reassuring Mrs Conner at the time of her diagnosis she would unlikely experience symptoms for 20 years, she already feels 'trapped' in her own body. She is pictured with Megan (right) and Leah on May 21 2015. Mrs Conner tries to stay upbeat for her children 

Despite doctors reassuring Mrs Conner at the time of her diagnosis she would unlikely experience symptoms for 20 years, she already feels ‘trapped’ in her own body. She is pictured with Megan (right) and Leah on May 21 2015. Mrs Conner tries to stay upbeat for her children 

But it was not until 2013 when Mrs Conner finally went to a doctor and was referred for an MRI scan.

She was then given the crushing diagnosis – at the same time as she was receiving fertility treatment. 

‘The diagnosis was an “oh my god” moment,’ Mrs Conner said.

Despite her condition, Mrs Conner tried to remain upbeat and went on to give birth to second daughter Leah, now three.

‘I tried to be as positive as possible and tried to adapt to things and overcome them,’ she said.

Speaking of her daughters, Mrs Conner added: ‘They were both a miracle and two girls whom I’m so proud of.’  

Mrs Conner is pictured recently with Megan (right) and Leah, who she is 'so proud of'

Mrs Conner is pictured recently with Megan (right) and Leah, who she is 'so proud of'

Mrs Conner is pictured recently with Megan (right) and Leah, who she is ‘so proud of’

Despite her diagnosis, Mrs Conner then had Leah (pictured at one-day-old on May 21 2015)

Despite her diagnosis, Mrs Conner then had Leah (pictured at one-day-old on May 21 2015)

Despite her diagnosis, Mrs Conner then had Leah (pictured at one-day-old on May 21 2015)

Mrs Conner is pinning all her hopes on a pioneering haematopoietic stem cell transplantation (HSCT) treatment in Mexico, which may halt the spread of the disease. 

The treatment promises to rebalance her immune system via a course of chemotherapy. 

‘Each day is a major struggle. It depends if the body wants to work,’ Mrs Conner said.

‘I really, really need this treatment. It could put me at serious risk of infection but it will give me a second shot at life.

‘As long as it stops the progression of the disease, that’s all I want. My condition is really bad at the moment, I even need help to roll over.

‘People rarely understand what living with MS is like.’

Ms Marcar added: ‘If you ask Maggie how she is she’ll say she’s fine but the truth is she has really deteriorated over the last year.

‘She always puts on a brave face but she has got worse. She’s an incredibly strong person.’

Writing on her fundraising page for HSCT, Ms Marcar claims her sister does not qualify for trial treatment in the UK due to her MS being too advanced. 

Ms Marcar wrote: ‘She is becoming trapped and the future is terrifying. 

‘As well as the physical, her memory and concentration is greatly affected too. Add to that the extreme fatigue and day to day life is very hard.’

The family are raising money towards the treatment, which costs $55,000 for 28 days, as well as flights to Mexico, a full-time carer while there, and any additional therapies or scans.  

Donate towards Mrs Conner’s HSCT treatment here

Mrs Conner is pictured on her graduation day in November 2005 after earning a degree from Aberdeen College  in Fashion and Textile Design. She later became a business manager 

Mrs Conner is pictured on her graduation day in November 2005 after earning a degree from Aberdeen College  in Fashion and Textile Design. She later became a business manager 

Mrs Conner is pictured on her graduation day in November 2005 after earning a degree from Aberdeen College in Fashion and Textile Design. She later became a business manager 

WHAT IS HAEMATOPOIETIC STEM CELL TRANSPLANTATION (HSCT)? 

Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS that wipes out and then relaunches the immune system using a patient’s own stem cells.

HSCT is a hugely promising treatment for MS, but it is also very aggressive with high risks.   

Clinical trials have shown it reduces relapses, with some patients also experiencing more stable symptoms or an improved level of disability. But these improvements do not always last.

For progressive MS, there are some encouraging results for patients treated early on in their condition where there is still evidence of inflammation.

HSCT has been shown to slow clinical progression in a few people with early secondary progressive MS.

How does it work?

Drugs encourage stem cells to move out of the bone marrow and into the blood where they can then be collected. This takes about ten days and can cause MS symptoms to get temporarily worse.

Chemotherapy is then given as an infusion to wipe out the immune system. This can take several days.

Finally, the stem cells are transplanted back into the blood via a drip to help ‘regrow’ the immune system. The stem cells start making new blood and immune cells within 10-to-30 days.

As the immune system is not working for a while during the treatment, a patient is more at risk of infections. 

They are usually put on antibiotics and transfusions to support them during this time. They also have to spend around a month in an isolation room.

Typically, patients need between three and six months to recover from HSCT. But for some, it can take more than a year.

What are the risks?

  • An increased long-term risk of infections
  • An increased risk of cancer and autoimmune conditions, such as thyroiditis
  • Early menopause in women 
  • Fertility problems 
  • And chemotherapy has its own side effects – including an increased risk of bleeding and bruising, fatigue, loss of appetite and hair loss

Who is it for?   

HSCT is available on the NHS. At the moment, it is only considered as a third-line treatment for people in England who meet very specific medical criteria.

A third-line treatment means it will only be considered for patients who have tried two different disease modifying therapies (DMTs) without success.

Results have shown HSCT is most effective for people with:

  • Signs of active inflammation, as demonstrated by frequent relapses alongside new or active lesions on an MRI scan
  • Early stages of the disease
  • No significant disability

Patients with highly-active relapsing MS despite taking DMTs are also eligible. 

HSCT has not shown to be as effective for patients with progressive MS who no longer show signs of inflammation and who have high levels of disability.

If a patient has been turned down for HSCT on the NHS, they can have it privately in clinics in the UK.

Source: MS Society  

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