Although the next phase was chemotherapy and had carried obvious risks, I have been in really high spirits and am thoroughly hopeful that this treatment will help me to overcome my progressive MS. The only risks of it failing in a general sense is if they fail to have killed off any of my old immune cells that might regroup. I can’t thank all of you enough for your massive generosity in facilitating me getting here. The hope and community that exists in all the people who are receiving treatment here is incredible and it is underwritten by some superb practice by Dr Federenko and his amazing team. Someone was telling me the other day that the famous Dr Burt, the big HSCT guru in Chicago, is about to release some data and research that will thrust HSCT right into the limelight. Drug treatments are merely sticking plasters and HSCT is the only thing that gets remotely close to doing something fundamental about the condition for MS sufferers.
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Well, it’s about time I updated you all on what’s going on over here in Russia. I have been here 16 days now and I am in fantastic hands. The hospital is superb, being very clean, exceptionally well-organised and full of equipment that appears to be better than the equipment back at home! An example of this would be the 3T MRI scanners that are twice as powerful as the ones I have been using back at home. This means that, instead of three lesions on my brain and spine, they have found 11. This fully explains my worsening disability as far as movement is concerned because some of those ones are on my spinal cord. My diagnosis of primary progressive multiple sclerosis is definitely upheld with what we have found out here.
The great news is that I passed all my pretests and was therefore eligible for the full treatment here. Everything has gone well so far and they spent three days extracting my stem cells after stimulating those tests. I was on a day off before my chemotherapy started the day after where they shaved my hair off, which was all good fun and I look like a proper boiled egg. I often have 5L of liquid pumped directly into my jugular veins, so having a urinary catheter is…amazing.
I’ve met some lovely people here and have even been involved in an American documentary film that is trying to put HSCT on the map. So watch out for me on TV at some point.
The treatment here, HSCT in general, is the only game in town. I am utterly adamant of this now. The data, the research, the evidence, what I have learnt here means that HSCT should be the primary treatment for MS (no matter what type of MS you have) and should be put front and centre stage as soon as you are diagnosed. I have done exactly the right thing in getting here as soon as possible. I saw a neurologist yesterday who was really happy that, though I had primary progressive multiple sclerosis, I was quite early on in my journey and therefore this procedure stands to be more successful and more effective. I plan on writing a rant that should be quite political and take a stab at Big Pharma, and for very good reason.
Anyway, I hope you are all well and thank you from the bottom of my heart again. Big love to you all, always.
You can follow my video diaries here – there are presently 17 of them, mainly for hopefuls of coming on these practices, but also for general interest:
I am now two days after chemotherapy, and everything is going tickety-boo. There hasn’t been a single hiccup yet, touch wood. And I hope it continues that way. I am due to have the big day today: my stem cells will be reinserted on what is called my stem cell birthday. After that, I get 10 days of isolation and then back home! My hair will fall out and I will not be able to leave the room, receiving very careful monitoring.
I hope this finds you well and look forward to writing and chatting with you on my return.