I can't believe how casual all your pre covid hospital visits are...maskless visits post transplant?! Feels like a different world..thanks for the Vlogs, so helpful
I know!!!! When I got out (and very quickly the world went insane), I realised how lucky I was to have a 'normal experience with it all. With my wife working in a hospital, I know very well how prevalent Covid is again (and how resurgent flu has been this year) - I imagine everything is insanely stringent now...
I was waiting for this super power you were talking about. It is not happening :( I am 7 days old now, so maybe there is still time :) LOVE your videos!
Thanks so much, Liudvika :-) It took a couple of weeks... but it was a super power that stayed for several months! As silver linings go, it's a fairly odd one!! I shall keep my fingers crossed for you
i love these vlogs. i was diagnosed with MS in June 2020, i was 18 at the time (now 19) so it was a big shock for me as it is for everyone. i enjoy watching videos like this to educate myself as it’s all so new to me lol, thank you for showing your journey :)
Thanks so much, Heather! I'm glad they've been useful 🙂 19 is so young! I was 21, and it spun me out for a while. It's good you're being so proactive with research! HSCT isn't a first line treatment (at least not in the UK). So unless things change it would be a bit further along in your journey. I hope 2021 is quieter (and generally, much better!) for you
I love watching your videos. They are informative with a lot of truth/humor. Do you know was yours myeloblative or Non-myeloblative? Hopefully I'll be getting mine within the next couple months. I sure hope it comes quick as my Lemtrada wore off 8-9 months ago and I've already had 3 relapses. 😞 I can't risk being on Ocravus then have insurance deny the transplant. Now that it has been a few years how are you feeling Chris?
Thank you for the kind words, DuckyJoJo1! I had myeloblative. I'm so sorry to hear about your relapses since Lemtrada. I failed three times after 3 rounds (1 after rd 2, 2 after rd3) before starting HSCT. I hope you get started with your treatment soon... 3.5 years (ish) post transplant now - I feel good! No relapses. No improvement on old symptoms, but no further degeneration (which I take as a win)
I am hoping to leave puebla tomorrow if I'm well enough. I had to have a blood transfusion yesterday and my wbc are being stubborn and not getting above 4000 which is what I need to be discharged. Good to see you home, although it sounds like you get sick pretty quick. Anyway, another good vlog that's good timing for me
I am keeping my fingers crossed that the numbers smash 4000! I'm willing it - by the time you read this, you'll be on your way home! I so hope everything has been ok, and the treatment has been ok. Going home was a real shock to the system for me, make sure to rest as much as you can possibly get away with!!!
@@HSCTforMS my wbc were 10700 so I did smash it! I had my rituximab infusion and now I have been discharged Thank god I can go home tomorrow. Your clogs really helped prepare me so thank you for doing them and posting them. X
@@catladycath YESSSSS! 10,700 is amazing, you really did smash it! I'm so pleased that the vlogs helped, even a little bit. I'm always interested to hear how people's experiences were different to mine. You're actually only 1 week behind where I was in this video! Massive good luck for the return to home :-)
Could I have it if i pay out of my pocket? Im very freshly diagnosed and according to the scarce bibliography, younger peeps, at earlier stages benefit more from this treatment.
I'm no expert on either thing. But my understanding is that, yes, the earlier you have it the better (designed for halting/slowing disease progression, rather than fixing damage). And in terms of payment - there are HSCT groups on Facebook full of people who have gone to Mexico or Russia and paid privately.
@@HSCTforMS I would opt for Sheffield or Uppsala. These clinics are the ones which have done the most scientific work to prove that HSCT is superior to most drugs.
It would be about cost. I think I remember someone telling me that private in the UK would be about £70-90k. Whereas Mexico is about half that (*I think*). Obviously, my entire experience is on through NHS. Definitely try the Facebook groups, there's so much info and everyone is really helpful.
I can't believe how casual all your pre covid hospital visits are...maskless visits post transplant?! Feels like a different world..thanks for the Vlogs, so helpful
I know!!!! When I got out (and very quickly the world went insane), I realised how lucky I was to have a 'normal experience with it all.
With my wife working in a hospital, I know very well how prevalent Covid is again (and how resurgent flu has been this year) - I imagine everything is insanely stringent now...
I was waiting for this super power you were talking about.
It is not happening :(
I am 7 days old now, so maybe there is still time :)
LOVE your videos!
Thanks so much, Liudvika :-) It took a couple of weeks... but it was a super power that stayed for several months!
As silver linings go, it's a fairly odd one!! I shall keep my fingers crossed for you
i love these vlogs. i was diagnosed with MS in June 2020, i was 18 at the time (now 19) so it was a big shock for me as it is for everyone. i enjoy watching videos like this to educate myself as it’s all so new to me lol, thank you for showing your journey :)
Thanks so much, Heather! I'm glad they've been useful 🙂
19 is so young! I was 21, and it spun me out for a while. It's good you're being so proactive with research!
HSCT isn't a first line treatment (at least not in the UK). So unless things change it would be a bit further along in your journey. I hope 2021 is quieter (and generally, much better!) for you
im on Tecfidera just now which seems to be working well so im sure it wont come to that point.
thanks very much, you too!
There are doing this in uc sandiego in california Dr Kauffman and Kinkel coverage of ppo and some insurance .
When I started, I had no idea how patchy the coverage for HSCT would be. It's always great news to hear of new centres offering it
I love watching your videos. They are informative with a lot of truth/humor.
Do you know was yours myeloblative or Non-myeloblative?
Hopefully I'll be getting mine within the next couple months. I sure hope it comes quick as my Lemtrada wore off 8-9 months ago and I've already had 3 relapses. 😞
I can't risk being on Ocravus then have insurance deny the transplant.
Now that it has been a few years how are you feeling Chris?
Thank you for the kind words, DuckyJoJo1! I had myeloblative.
I'm so sorry to hear about your relapses since Lemtrada. I failed three times after 3 rounds (1 after rd 2, 2 after rd3) before starting HSCT. I hope you get started with your treatment soon...
3.5 years (ish) post transplant now - I feel good! No relapses. No improvement on old symptoms, but no further degeneration (which I take as a win)
I am hoping to leave puebla tomorrow if I'm well enough. I had to have a blood transfusion yesterday and my wbc are being stubborn and not getting above 4000 which is what I need to be discharged. Good to see you home, although it sounds like you get sick pretty quick. Anyway, another good vlog that's good timing for me
I am keeping my fingers crossed that the numbers smash 4000! I'm willing it - by the time you read this, you'll be on your way home!
I so hope everything has been ok, and the treatment has been ok. Going home was a real shock to the system for me, make sure to rest as much as you can possibly get away with!!!
@@HSCTforMS my wbc were 10700 so I did smash it! I had my rituximab infusion and now I have been discharged
Thank god I can go home tomorrow. Your clogs really helped prepare me so thank you for doing them and posting them. X
@@catladycath YESSSSS! 10,700 is amazing, you really did smash it! I'm so pleased that the vlogs helped, even a little bit. I'm always interested to hear how people's experiences were different to mine. You're actually only 1 week behind where I was in this video! Massive good luck for the return to home :-)
Hey can i please know if hsct has helped with ms and how are u doing now ?
Could I have it if i pay out of my pocket?
Im very freshly diagnosed and according to the scarce bibliography, younger peeps, at earlier stages benefit more from this treatment.
I'm no expert on either thing. But my understanding is that, yes, the earlier you have it the better (designed for halting/slowing disease progression, rather than fixing damage). And in terms of payment - there are HSCT groups on Facebook full of people who have gone to Mexico or Russia and paid privately.
@@HSCTforMS
I would opt for Sheffield or Uppsala.
These clinics are the ones which have done the most scientific work to prove that HSCT is superior to most drugs.
It would be about cost. I think I remember someone telling me that private in the UK would be about £70-90k. Whereas Mexico is about half that (*I think*).
Obviously, my entire experience is on through NHS. Definitely try the Facebook groups, there's so much info and everyone is really helpful.
@@HSCTforMS
I read about 30,000£.
In the US, the cost is a lot lower.
Could very well be. I honestly don't know... But there are a *lot* of US residents that I have seen in the HSCT group that went to Mexico