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.
Jenny, you are so ready for this! HSCT in Mexico. There are certainly a lot of Very intelligent Physicians and medical researchers in Mexico! The Medical Insurace for patients who are residents of Mexico, probably doesn’t exist. At least residents of Mexico near the Arizona border. That would create a lot of patients willing and needing experimental medical care. While researching HSCT in Mexico, the Medical Professionals have tested often and can now offer successful treatments for MS patients in other countries to seek their help. FDA approval in the US is slow and very detailed unless they’re faced with a Global pandemic. Your Blog is so beautifully written. Your optimum is so obvious that I feel very positive and optimistic for you! Congratulations, you’ve answered the BIG question for all of the others with autoimmune diseases! Strangely, I wouldn’t think that MS was ever a disease seen in Mexico. Almost always a disease affecting people near the northern areas/hemispheres. Other autoimmune diseases may be more typical in Mexico. Jenny, you are doing the right thing at the right time in the best, most trusted location. Thank You from all of us suffering Poltergeist, as you accurately described the symptoms and difficulties that abound in Poltergeist! Please keep writing in your blog, for the others in need of a cure, which IS HCST. My prayers, I of our prayers will help you during your Cure :). Bless You and thank you Jenny Angus.
Thanks for your thoughtful reply and feedback Patty! I really appreciate hearing your thoughts. Thank you also for your prayers and kind wishes, and rightback at ya!
I have been interested in hearing more about HSCT and this is great to be able to hear your journey. I look forward to hearing how things go over time with everything and am looking forward to many more posts.
Jenny, I’ve been thinking about you! Whatever you decide to do I totally support you and you also know how I feel about HSCT! 😉 I’d still be in a nursing home at 32 if I didn’t have it done. Absolutely the best decision I ever made. And pre HSCT I was also having a lot of new activity. I’m a big baby but if I could do it anyone can! 😀
Thanks Nadine. You are the poster child of an HSCT miracle!