Today (May 30) is Annual World MS Day.
Multiple Sclerosis (MS) is a disease that attacks the central nervous system (the brain and spinal cord) and affects more than 100,000 people in the UK.
It is a life-long condition which has no cure but can be treated in a variety of ways, including through medication, physiotherapy or a change in lifestyle.
MS sufferer Tracey Seal (pictured) runs the MS Coffee Group at Trinity in Thanet.
Here the 51-year-old from Broadstairs looks at how the condition has touched the lives of herself and her loved ones:
One of my earliest memories as a child fondly takes me back to playing with my amazing best friend, Toni. We were born exactly two weeks apart and were blessed to live next door to one and other, until around age 10. Much like twins, we were into everything together, we truly were two peas in a pod.
It was so much fun being able to just hop over the back fence, to play in each other’s gardens. Come rain or shine, there was always somewhere for us to play. On bad weather days, we even sat inside the garden shed.
Where we lived, we were surrounded by many mature trees. I remember one Summer, our brothers building the biggest tree swing you ever did see. We took it in turns to see who could swing the furthest, we all came off many times, bruised and scratched, especially myself. It certainly never put us off going back for more.
Every Christmas, quite mysteriously, we somehow managed to end up with the exact same presents. From roller skates to bicycles with stabilisers. I think our amazing parents must have spent many a conversation leading up to Christmas on what to get us, so we could play together.
We were very lucky that our gardens backed onto a disused railway track. At around age 8, we frequently went up the very steep wooded hill to reach the track at the top, then slipped down the other side. We weaved in and out of weeds and bramble, with not a care in the world, following a track that was a little over a mile long one way.
Due to my family being Catholic and Toni’s not, we went to different junior and secondary schools, but that never stopped us being the best of friends and spending every spare moment with one another. Sweet Pea, as I came to call my BFF (best friend forever), very much became my soul sister.
In the early 80s the time came to leave school and in just a few short years, our lives would take a dramatic turn. This was long before the days of mobile phones and the internet. With no email addresses and in virtually the same year we both went to live with the loves of our lives in different directions, for me it was off to London.
Thirty years passed and thankfully with the help of Friends Reunited and a wonderful thing called fate, we were ecstatic to meet once again. Little did I know that barely two years later, we would come to share something far more reaching than friendship, instead a very painful journey that would shape and change our lives forever.
Twenty-six years after my diagnosis of Multiple Sclerosis, Sweet Pea was staggeringly diagnosed with something called Clinically Isolated Syndrome (CIS).
I carefully listened to all of her symptoms, but my gut instantly told me it sounded a lot like MS, as I had suffered all of them and more myself. My heart was broken when she finally received this diagnosis. She sent me an email and I burst into tears. I would not wish this disease on anyone, especially my BFF. The news hit me very hard.
Sweet Pea was immediately introduced to an MS Nurse Specialist and offered Disease Modifying Drugs to halt its progression. A drug routinely offered to someone with MS. But they told her with CIS, she had something that could later develop into Multiple Sclerosis. I knew all along that she had the early stages of MS, but a thing called the MacDonald Criteria, now means that only after so many relapses and very specific symptoms, can you officially be diagnosed with MS.
In 1987 a very good neurologist at my hospital was able to diagnose me on the spot. All without the added help of any MRI equipment, which as it happened, was not even available in those days.
If I could turn the clock back to my first year of diagnosis, I would have immediately started LDN (Low Dose Naltrexone). If I had started this inexpensive private prescription drug back then, I truly believe I would still be walking and working today.
It is very sad that a drug that is completely free from all side effects, which stabilises the immune system, is also an excellent pain reliever and mood lifter, is not available on the NHS. Because of this, I have to pay £25 a month to have it sent down to me from a pharmacy in Scotland.
LDN is the cheapest available treatment on the market, yet NICE are not prepared to authorise its use without some simple clinical trials. I can only assume that as the drug was first released in the 1980s and is now out of patent, no pharmaceutical company is willing to produce it, if there is no financial gain for them to do so. Ironically, Naltrexone is available on the NHS to any heroin addicts at 50mg plus, to halt any cravings. But it is not available to someone like me with MS at a minuscule amount of just 2mg a day, to halt inflammation in the central nervous system.
When the time is right for her, I hope my dearest Sweet Pea will also try LDN. Only this month, her neurologist has finally told she has Relapsing Remitting (RR) MS and has decided to first try a DMD called Aubagio. I wish her all the very best and really hope this works out for her.
There are many hurdles to cross on this spiralling journey into the unknown world of Multiple Sclerosis. We all have to decide for ourselves which route and vehicle to take. There is no right or wrong way, as there are no guarantees or future projections. My philosophy is trust your gut instincts and try to listen to those people who for some unknown reason come into your life, to teach you something important. For me that guardian angel was a very good friend of mine called Judith, who introduced me to LDN two years ago.
As today is Annual World MS Day, with this year’s topic being research, I would like to know how two women, who are not blood related, but just good friends, born two weeks apart, both end up with MS?
One year after my diagnosis, my husband’s youngest brother Andy was also diagnosed with it. He had the worst kind, advanced Primary Progressive, and sadly died after living with it for a little over 10 years. Three years after Andy’s diagnosis, incredibly another brother, Chris, was also diagnosed. My poor husband has two brothers and a wife diagnosed with MS. What are the chances of that?
This is why the right type of research and, in particular, an in depth UK data base, is desperately needed in the future. On this Annual World MS Day we need to look for a common denominator.
Now is the right time for all of us who actually have MS to be asked about what happened in our lives and what it may be that connects us.
MS Coffee Group at Trinity in Thanet
Trinity Community Resource Centre Café
St Mary’s Avenue, Margate
Next meeting dates:
June 5, 19