I was diagnosed with MS in 2016 after being investigated in 2013 for issues with balance, dizziness and control of my left leg. At that time it was diagnosed as Transverse Myelitis.
I found out about HSCT from the mainstream UK MS Charity sites approximately 3 hours after diagnosis. They present a fluffy image of MS and quote stats like ‘only 15% end up in a wheelchair’.
I was told my MS was aggressive and that I should consider disease modifying treatments. Having already researched the UK HSCT criteria, I opted for Tysabri as I knew one of the criteria was failure on that particular drug. I was classified as RRMS EDSS 1.5 - 2. Tysabri offered an 80% chance of possibly reducing the frequency of relapses and hopefully slow- down the disease.
For 2 years, I diligently attended every 4 weeks for a 2-hour infusion and witnessed the brutal truth of my future. I was the most mobile person in the group when I started. The rest of my cohort either used some form of walking aid or were already wheelchair bound. They had all been on Tysabri for over 5 years.
During that time, I researched HSCT, avidly following James Coate’s story and witnessed the birth of AIMS. I joined all the HSCT groups on Facebook and spoke to several HSCT veterans; both those for whom the treatment was successful and those for whom it sadly wasn’t.
The message I kept hearing was - don’t waste time trying to qualify for HSCT on the NHS.
By October 2018 my mobility had; slowly but progressively; deteriorated to the point where I was using a stick and could no longer walk more than ~100 metres. I had persistent dizziness, balance issues, fatigue, brain-fog, foot drop in both feet, plus a host of other debilitating symptoms.
I suspected I had progressed to SPMS, but my neurologist disagreed; despite the obvious progression in such a short space of time; preferring to keep me classified RRMS EDSS 6.
This was designed to continue to qualify for Tysabri or Lemtrada as no medication was available for SPMS.
Any mention of HSCT was met with utter derision.
I went to Moscow in July 2019; disillusioned with the NHS’s attitude towards HSCT; and as I suspected, confirmed SPMS EDSS 5.5 and heading for a wheelchair within 5 years. The quality of medical care and compassion was astounding. Since returning, it has been difficult accessing aftercare. Again, the level of support and aftercare from Moscow exceeds the UK.
Since HSCT, most symptoms have abated and already my mobility is better than 4 years ago. I am continuing to improve daily.
It was worth every penny and I have my life back.