Teresa Lloyd wants to dream again. The 46-year-old mother-of-three has Multiple Sclerosis and the debilitating disease has robbed her of dreams and aspirations for the future. She mitigates the pain and overwhelming tiredness by managing her energy levels to carry out daily tasks and provide quality time for her family. She knows a wonder drug in her lifetime is unlikely, but after 10 years of worrying about what the future might hold she has finally been given hope of staying in control of this life-limiting and progressive disease. DEBBIE DAVIES reports.
LIKE most MS sufferers, Teresa Lloyd experienced a myriad of signs and symptoms before she was finally diagnosed with the disease which affects up to 2.5 million people worldwide.
In her case it took almost 10 years before she was given a diagnosis, and even then she was told it was “probably MS”.
The first clue came in 1992 when she was pregnant with her first child. She dropped the telephone after pins and needles shot up her arm, but negative test results left her doctor to conclude the “baby was sitting on a nerve”.
Over the next few years her energy levels dropped dramatically and some days the joint pain would be so bad that she would literally have to thump her legs to get the circulation to return.
Then in the summer of 2003 she had more tests which suggested she had an inflammation of the spine, which essentially is what MS is, and finally she was given the confirmation that the pins and needles, joint pain and debilitating tiredness that would suddenly and unexpectedly wash over her, all combined to have a cause that had a name, MS.
Teresa admits that after years of frustrating symptoms and pain her first reaction was one of relief.
“I suddenly felt like I wasn’t going mad and all these things I had been feeling and experiencing were not in my head.”
Seven years on, she needs a daily cocktail of drugs to ward off the tiredness, she can’t walk far without a stick and unless she paces herself she will need days to recover from any over-exertion.
“I miss lots of things. I miss dancing and riding a motorbike and even silly things like not being able to wear high heeled shoes,” she says.
“But the tiredness is the worst thing. I plan the day so that I have enough energy for the children after school. That means doing simple thing like dividing up the housework and doing the upstairs one day and the downstairs the next. I just want to dream again. I don’t dream anymore.”
It was through this process of grieving for the life and energy she has lost through MS that Teresa decided to look for answers outside the NHS.
“I was pulling my hair out; I thought there’s got to be more to life than this so I started doing my own research. There are drugs out there, but if they have not undergone clinical trials in this country then they are just not available even if they are being used elsewhere in Europe or America.”
Her research finally led her to Italian vascular surgeon Dr Paolo Zamboni and his discovery that 90 per cent of MS patients also have a condition called Chronic Cerebrospinal Venous Insufficiency (CCSVI) which can be treated with surgery. Zamboni, whose wife has MS, realised that veins and the pathways that carry blood from the brain back to the heart can become blocked or narrowed in MS patients in a similar way to CCSVI patients. Zamboni’s clinical trial, he carried out 65 operations on people with MS, resulted in 73 per cent of his patients having no symptoms after two years after surgery.
Teresa will undergo a scan at a private clinic in Scotland next week to determine whether she has any blockages or narrowing in her veins which will make her eligible for surgery.
“CCSVI and MS are not the same but Zamboni’s research makes sense because most of the symptoms of MS are circulatory – the pins and needles and the cold hands and feet – so it makes sense that it would all be to do with blood flow.
There has been some negative press about this particular treatment, but in this country we are prepared to spend £30,000 a year on drugs for MS patients that are not even 90 per cent effective.
If the scan is positive, Teresa will then have to find £5,000 to have surgery in Italy.
“It does make me cross and it does frustrate me that if the test is positive and I can have the operation that I will have to pay for it myself.”
And while she knows the surgery offers her hope, she also knows the future may be bleak without it.
“I know that CCSVI doesn’t cause MS, but it is something that happens to people with MS, and it is my body and I want to do this.
“It would be wonderful to be able to think more clearly and not have this horrible brain fog.
“I am realistic about the surgery. If it stops the MS from getting any worse that will be great and anything else is a bonus. If someone with MS is in a wheelchair, they are not going to undergo this procedure and get up and walk, but for someone like me, it may mean I don’t end up in the wheelchair. I don’t want to give into MS and this gives me hope. I’ve got MS, it hasn’t got me.”
debbie.davies@archant.co.uk
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