My fight to slow a speeding train
I remember the moment I was given my diagnosis of relapsing remitting MS, it was November 2016. I’d just given birth to my son two months ago and Christmas was just around the corner. I was a mixture of emotions and I wasn’t feeling very festive.
I tried to enjoy my children as much as I could and fill my mind with positivity. Unfortunately, it wasn’t long until I started to relapse and MRI scans kept showing new lesions every time.
My MS was classified as highly active and I had to choose between Lemtrada (alemtuzumab) and Tysabri (natalizumab, also called Tyruko) as they were the most highly effective disease modifying therapies (DMTs) to slow down the progression of my MS. I chose Lemtrada.
From highly active to aggressive
Three years into my diagnosis brought me another autoimmune disease, more relapses and new lesions. After moving from Lemtrada to Tysabri my MS was reclassified from highly active to aggressive. I thought to myself:
“how the hell do I slow down this speeding train!!”
After more than a year of being treated with Tysabri it was clear from blood tests that it was becoming risky, even though my MRI scans were showing no new lesions.
I hadn’t had such stable scans in a while and I felt great. So you can imagine my disappointment when I was told by neurologists that I couldn’t be treated with Tysabri for more than two years.
A new stage in my fight
Now that I’m fast approaching my third year on Tysabri my neurologist believes I'm a great candidate for the hematopoietic stem cell transplantation (HSCT).
I had never heard of it before so my neurologist explained the procedure to me and the possible benefits of the transplant if it worked.
After doing my own research on HSCT, talking to my family and reaching out to other MS warriors who already had the transplant, I agreed to move forward with HSCT.
My neurologist soon got me approved for HSCT on the NHS at my local hospital in South London. My Tysabri treatment was soon stopped so I'm waiting for my start date.
A tough treatment
HSCT is a tough treatment and it involves rounds of chemotherapy. But I know this is my best option to attempt to bring this speeding train (my MS) to a halt and be the mother my children deserve for years to come.
You can follow my journey on Instagram @thenerveofmyms or can find me on my YouTube channel The Nerve of my MS.