Tracey's fight against Multiple Sclerosis

Hello, my name is Tracey and I was diagnosed with Relapsing Remitting Multiple Sclerosis in January 2019 when I was just 33 years old. I’d not long become a Mother for the first time (my Daughter was only 16 months old) and this diagnosis was earth shattering. The grief I felt was like nothing I’d experienced before, it was then I found out my long and hard journey of acceptance had just begun and I was to go through the many stages of grief before I got there - although I still don’t think it’s a diagnosis you ever truly accept.

Looking back my first symptoms presented themselves 9 years prior to being diagnosed, but were mistakenly put down to back issues I’d had from my previous job as a Beauty Therapist and I have Physio and went to see an Osteopath regularly. I also noticed a notable decline in my cognition when I started studying a new qualification for my change in career, and although this was a worry in the back of my mind I’d make an excuse of I was just probably tired and overdoing it, but I knew deep down there was more to it.

 

People who have Multiple Sclerosis have a weakened blood brain barrier, meaning my rouge immune cells are able to get into the central nervous system and start attacking the special coating around the nerves in the brain, optic nerve and spinal cord. The best way to describe it would be if you stripped an electrical wire of the plastic cover and expose the wires inside, that’s what my nerves look like. This can result in having many different symptoms from constant pain, spasticity, stiffness, fatigue, cognitive problems that affect your thought process, speech and word finding as well as vision and balance issues, temperature intolerances, pins and needles, numbness and in some cases the ability to walk or look after yourself - the list goes on. People with MS also have brain volume loss at a quicker rate than someone who doesn’t have MS which is terrifying! I’m currently Relapsing and Remitting which means I have relapses where I get better for a time but the damage has been done. My body is able to try and heal this damage, but it will never fully heal and over time I will lose the ability to heal at all. Sadly, MS is progressive but can also be a silent disease, so even when MRI’s show ‘no evidence of disease activity’, it is still progressing in the background and has been known by some professionals as ‘Smouldering MS’. As MS is progressive there is a very high probability that I will progress to Secondary Progressive MS (the vast majority of people do) where I won’t get better, just progressively worse.

MS is unpredictable and cruel and the thought of not being able to walk along side my Husband and Daughter one day, living in constant pain, or becoming a burden is something I’m simply not willing to sit back and let happen! MS is a constant worry and feels like a ticking time bomb. There is no cure and I live in fear that one relapse could change my whole world forever and there are no warning signs or heads up!

 

Since being diagnosed I have constantly researched for answers as to why this has happened? How can I slow this down? How can I heal quicker? How can I prevent relapses? This prompted me to make changes to my life style as well as my diet. Then, two years ago I came across HSCT and thought ‘oh no, that’s way to extreme for me!’, but I always went back to it. I then came across Clinica Ruiz in Mexico who are the leading facility treating people with MS and have been doing so for 20 years!! HSCT treatment (Stem Cell Treatment) is 85% effective at halting disease progression with the possibly of reversing previous damage and preventing brain volume loss, but it is best done as early on in the disease as you can. All available disease modifying drugs in the U.K. will only slow the progression of my disease by 15-50% and will not do much for the brain volume loss caused by MS. Although you can get HSCT in the U.K, unfortunately the NHS criteria is too strict and I would have had to have failed other drugs first, shown active disease (not all disease progression can be seen on an MRI) and by this point will have accumulated more irreversible damage.

 

The treatment of HSCT involves living in the medical facility at Clinica Ruiz for 28 days where I will be looked after 24/7 by a Specialist Carer whilst I have treatment done. I will receive Chemotherapy to kill my rouge immune system, I’m then given twice daily injections for 7-8 days so that my bone marrow produces stem cells (known as Liquid Gold), these are then harvested and given back to me, with a couple more rounds of Chemo (to make sure we’ve killed all of those rouge MS cells) which results in a brand new immune system free of MS, but then my journey to healing has only just begun. I have months of healing ahead of me as well as what they call the ‘rollercoaster’ as old MS symptoms can flare up and the healing process can be hard, so as you can imagine this decision was NOT made lightly.

Although this will not be an easy process physically, emotionally or spiritually and it will be devastating to leave my beautiful Daughter and Husband behind (who I’ve never been away from), it is a journey I must take and at least try with the odds of 85% of stopping my disease advancing.

 

I’m a very private person and have found putting myself out there, telling people of my illness and asking people for donations very hard, but everyone has been truly amazing. I’m booked to fly out to Mexico on the 23rd of October 2022 and I know in this current climate people may not have alot spare themselves, but any donation no matter how small is greatly greatly appreciated as well as sharing my story to raise awareness.

 

Thank you from the bottom of my, my family and my friends hearts to anyone who's took the time to read this, share it or donate. I will forever be grateful and it means more than words can ever say.

Love,

Tracey, Reece & Esmè

xxxx