@andrewm 

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andrewm

Stopping MS with HSCT: Andrew's Mexico Adventure

I'm sharing my story as it might be helpful for other folk in a similar position. About (roughly) 2 years ago I noticed my feet and left leg started feeling a bit numb and also had a strange sensation around my waist (which I'd later learn is an MS Hug) - felt a bit like wearing boxer shorts that were too tight lol. Anyway, I went to A&E and they did bloods etc. and after a few hours said they were fine and to arrange a referral to a Neurologist. That took a bit of time but got a lumbar puncture and MRI and they said it was Clinically Isolated Syndrome (CIS), basically a one-off event. After that the symptoms got less, my waist returned to normal and the numbness in my legs reduced to where it was mainly just my left foot. Roll on to October 2022, I woke up with tingling / numbness in my finger tips. I left a message with the Neurologist and they did another MRI in Jan this year where they saw another lesion on my brain and more damage higher on my spine which would explain it being my fingers this time rather than my feet. It was then I got a diagnosis that it was Multiple Sclerosis. I met with the MS Nurse locally about a week later who suggested I should start Tecfidera. I went to get the blood test at the local hospital to check for the JC virus for the increased PML risk. I read a lot about all the DMTs and their effectiveness and side effects, and it looked like HSCT (Haematopoietic Stem Cell Transplantation) was the only option to have a very high chance to stop any further progression without taking drugs / infusions regularly. The treatment involves using chemo to wipe out my 'bad' immune system, then my own stem cells are given back to me to speed up the recovery process. I started reading / watching everything I could about it (especially Chris Wasey's vlog on YouTube which was great - he had HSCT done in the UK) and started looking into getting it done via the NHS. The UK criteria is that you need to fail at least one DMT but in my mind failing a DMT means having another relapse... which likely means further irreversible disability. I looked into doing HSCT privately in the UK, but the criteria is the same, therefore I looked to see where else you could get it done. I joined a few HSCT groups on Facebook, had a call with the AIMS Charity where I spoke to someone who had HSCT in Moscow a few years ago and also met a lady locally who had it done in Mexico. Pretty much everyone I've spoken to that's already had HSCT wishes they had it sooner. I ended up booking Clinica Ruiz in Mexico and am flying out on the 28th May 2023 for 4 weeks. Everyone that's been there that I've spoken too says it's world-class. My symptoms are manageable just now but I want to do everything I can to try and stop any further progression. I'll be posting updates regularly on the group below for anyone interested in learning more about it. There's also likely to be a lot of pictures of food from the 4 weeks I'm there! https://www.facebook.com/groups/1300813437183945
@jen6

Good Luck , will follow your progress , thank you x

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@Alexr76

All the best friend , I await with great interest ,also what it costs in total

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