During the decision-making process of whether or not to do HSCT, I researched both science-based information, and I also sourced references from patients who had been. Luckily, some were friends of mine and others were patients at the Clinica at that time. A few others were within the MS community. Everyone was very excited to help!
In September 2021 I contacted CLINICA RUIZ in Mexico a second time (first was in 2019), but this time I had very in-depth medical questions. I had already compared the HSCT protocols between the various facilities around the world. I wanted to know why their facility was one of the first choices for so many MS patients. Things such as myeloablative HSCT versus non-myeloablative HSCT techniques kept coming up. Clinica Ruiz offered only the ‘non’ option. Was non-myeloablative going to be strong enough for me or would I survive the alternative if I even found a facility that did it?
Other issues to consider were those of criteria, and how perfectly (or not!) did I fit into them? Who was most likely to benefit? And if not, why? To say all of this was overwhelming to a non-science trained patient is an understatement. However, I was determined to learn what was the best and most effective approach for my specific type of MS (or at least what I think my type of MS is).
It seemed as though there was a commonality within the protocols, and amongst the Stage II Trials completed to date. What I found most interesting is that Clinica Ruiz had solidified a well-established 28-day protocol for the treatment of MS. They had been doing it for several years for MS and many other autoimmune diseases.
Still very uncertain, I requested an urgent consult with my MS neurologist, who I might add has a nine month wait list. Luck was on my side that day when I called in: he had just released one extra day for patient consults. It was set for October 18th 2021.
I had a list of very intense and serious questions for him, all of which had to be answered within our 15-minute time slot. It was a zoom meeting and as always, it’s best to stay unemotional and stick to the facts.
I stated my case, feeling as though the disease was still active (meaning I had had two relapses in the last year). I had been receiving three infusions a month (1000 mg/day) of methylprednisone (aka steroids) for the previous three to four months. I always had a positive response to the steroids (increased functionality and decreased pain albeit temporary), which was another sign that my disease was active and perhaps responsive with HSCT.
I asked for a referral within Canada for it, but given it’s an unapproved treatment, he said again it wasn’t possible. (Well, it was possible except I didn’t perfectly fit into their very narrow ‘research’ criteria). We discussed going out of country for it. I shared my research of what Mexico offered versus other facilities. He said I might not have relapses anymore and would support my decision to have HSCT if that’s what I wanted. This was HUGE! I’d heard many people say their neurologists ‘fire’ them as patients if they go out of country.
The next steps were to set me up with a referral for a specialized haematologist for my return. I could see him rifle through a big pile of papers on his desk trying to find the name of the person he knew wanted to see a HSCT program for MS get ‘off the ground’. We parted our zoom meeting with smiles and I felt a flicker of something brewing in my belly, but I couldn’t quite figure out what it was….
It was hope.