£17.05 Raised for MS Research
WHAT IS MS?
Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation and balance. It's a lifelong condition that can sometimes cause serious disability.
In MS, the immune system attacks the layer that surrounds and protects the nerves called the myelin sheath. This damages and scars the sheath, and potentially the underlying nerves, meaning that messages travelling along the nerves become slowed or disrupted.
My MS Journey
My Story:
My name is Ashley and I was diagnosed with Relapsing-remitting MS (RRMS) in February 2022 although the big symptoms started in October 2021. The first major signs was when I started experiencing incredible fatigue that would come out of nowhere and a tingling sensation that shot through my neck, down my spine wrapping round my waist before shooting into my legs. This happens when I look or tilt my head down which as i’m sure you can imagine isn’t the nicest of feelings, it makes me jump and I jolt my body, sometimes even letting out an ahhhh from the surprise of it.
Shortly after I went to the doctors regarding this I was sent for an MRI of my neck and my head, when the results came back it was quite a shock to see 6 white dots in my brain and 4 in my neck. I was told these were called lesions (areas of swelling) where my immune system have been attacking my own body instead of protecting it.
At this point a diagnosis still wasn’t given and the next step to find out for definite was to go for a lumbar puncture. This I did not enjoy one bit! Without being to graphic a large needle is pushed through your lower back and in-between your vertebrate to get to the liquid in your spinal cord, this gets extracted and sent for testing.
It was when the results from the lumbar puncture came back that the bad news came and I got my diagnosis and was told this was an incurable disease, I was spoken to about how this could effect me going forward and how the disease would progress. We then touched on the certain treatments that were available and how they could potentially slow down the progression of the disease, i opted for an injectable medication called Plegridy. The first injection was horrible, not because of the injection itself but the side effects…..basically what MS medication does is it lowers your immune system as that is what causes the issues, with this though comes flu symptoms, muscle aches, energy loss, headaches all on a large scale.
As I was saying the effects from the first injection were horrific, I was laying on my sofa in a ball shivering uncontrollably, hyperventilating and could barely move from my body aching so bad. I was told this could happen the first time as your body tries to reject the medicine. I continued to take my injections every two weeks and the side effects did improve, until around 10 jabs in I began to get a terrible pain in my groin and armpits. This was my lymph nodes swelling up (lymph nodes help the body fight infections) the Plegridy was creating an infection when it lowered my immune system which is meant to be the bodies defence against infections, this meant I was at a high risk of catching harmful viruses with no way of protecting myself.
It was then that something happened to me which I can only describe as my body shutting down! I had the lowest energy levels I have ever felt, I could barely walk - I was walking at the speed of a snail, climbing stairs I felt like an elderly man, I would get out of breath in seconds. This I think (me and the doctors were not 100% sure) was what they call a relapse - this is when my body is being attacked with full force! This lasted almost 3 weeks then slowly I began to return to some sort of normality, I use the term loosely.
Since then I still struggle day to day with some days being worse than others but with some new medication and treatments on the horizon i hope to slow down the progression of the disease and work towards learning to live with my diagnosis.
I hope this has been educational and insightful, a little look into the life of someone who is living with Multiple Sclerosis. This is why it is important to keep researching into treatments and cures for MS, so it can help elevate some of the struggles MS sufferers deal with on a daily basis.
If you or anyone you know has been living with MS or someone who has recently been diagnosed I am more than happy to talk more about my MS journey. So please reach out and send an email via the contact info on this site.
Thankyou for taking the time to read my story and together we can work towards supporting those in need.
Ashley xx
MS Organisations
There are a few different MS charities in which you can donate money or time too.
Some are worldwide, some are based in the UK and some may even be local to you. Maybe you have a family member or a friend who suffers from MS and you would like to help. If so here are a few organisations details and information that I would like to share with you.
Thankyou for your time and generousity.
Sussex MS Centre
Sussex MS Centre is an organisation based in Southwick West Sussex, it is run by mostly volunteers and are solely funded by donations. They are a flourishing user-led community with a small team of professional staff and a dedicated Board of Trustees. Most of them also have MS, and is a great place to have a friendly insightful conversation with the team.
The Sussex MS Centre have an Oxygen Therapy chamber and is at the heart of what they do, but they also offer individual holistic therapies and drop-in classes to help with managing symptoms, and have a thriving social calendar.
MS Trust
An MS diagnosis can be devastating, for both people with MS and their loved ones. You may feel lost, lonely and uncertain of the future. But you don't have to deal with it alone.
The MS Trust is there for everyone affected by MS, from the moment of diagnosis and throughout your journey. They are there for you today, tomorrow and every day after, making sure a life with MS isn't a life defined by MS.
The MS Trust also work with the NHS to fund new MS nurses in the areas that need them most and ensure people with MS have the care and support they need.
MS Society
The MS Society fund world-leading research, share the latest information and campaign for everyone's rights. Together we are a community and together we can stop MS.
They understand what life’s like with MS, and together we are stronger. They are researching, writing, campaigning and fighting, running, walking, caring and talking.
To spread the word that together we strong enough to stop MS.