The Man (or Woman) in the Arena
If you live in the US your neurologist will likely tell you that you are not that bad, or not that far along, or you are doing SO WELL on your DMDs that you don't need HSCT. They will tell you that if you have HSCT in Mexico or Russia you will come back in a body bag. Ignore them, it's your body, and you are the one in extreme pain, deteriorating, losing your balance, eyesight, ability to walk or talk. They do not know what it's like, even if they empathize and say they do. THEY DON'T. They are not losing anything, if anything they are gaining by having you as a patient. If your HSCT is successful, you won't need a neurologist anymore.
Just after I was diagnosed with PPMS, I had a consultation with Dr. Burt and Dr. Balabanov. At the time my EDSS score was 1.5. I was told that I wasn't a candidate for HSCT because I wasn't progressed enough. I was trying to get into an HSCT trial in the states, so that my health insurance would pay for it. But I was denied.
My neurologist put me on Ocrevus, which is a anti-CD20 antibody that kills B-cells. I continued to progress and hated it every step of the way. In 2020 I tried to join an HSCT trial in Wisconsin, but it never started due to COVID-19. As I wrote in an earlier post, I stopped my Ocrevus infusions in March of 2020 because I didn't want to be immunosuppressed and die of COVID. In February of 2021 my neurologist was very excited for me to enter a study for a new MS drug. I did this trial for 4 months and continued to rapidly progress. In the first month I never felt worse in my life, my neurologist told me that it was expected, that I would feel worse before I would feel better, but this drug was going to help me. It never did. I continued to get even worse, so I stopped doing the trial on June 21. That day I made the decision to go to Puebla and contacted Clinica Ruiz. At the beginning of that last trial in February, I had an EDSS score of 4.0. As of writing this today my EDSS score has gone up to 5.5. There is a woman here in Puebla who is also an EDSS of 5.5 and she is in a wheelchair most of the time. The last time I saw my neurologist I told him I know I am progressing in the study he had me in, and he didn't seem surprised at all. I was really upset because at the start of the study he made it seem like this drug trial would keep me from progressing. He told me I may even have a reversal of symptoms!! That is the reason I joined the trial! Now I am MUCH worse off and the doctor is just sitting there, like oh, that's too bad. AND NOW I'M PISSED OFF.
I told the neurologist that I am going to Mexico for HSCT and he told me if I do, I'll come back in a body bag. The thing is, I know he is wrong. This procedure is done well in Puebla and is very safe. The survivability rate is 99.6%. Two people out of over 1,100 have died in Puebla. One woman in 2019 died because she was constipated and didn't tell the doctors. The other person who died had a gastro condition that he didn't report to the doctors.
From what I have read on the HSCT FB groups and what I have heard from others with MS is that MANY (most) neurologists in the US continue to remain willfully ignorant of the procedure and the benefits of HSCT.
I was glad to hear from my new friend from England that she did not have the same experience that I did. Her neurologist was in favor of her getting HSCT as soon as possible.
It costs $55K to get HSCT for MS with Clinica Ruiz and $60K if you want HSCT for lupus. It may be cost prohibitive for many, so if you need HSCT....
START FUNDRAISING TODAY, RIGHT NOW, DON'T WAIT!!
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