Last reply 1 month ago
Six weeks post hsct.

Six weeks into, three months of staying away from germs. All blood levels so far have been good. Positive improvements to date are, feeling back in left foot, better balance and walking and fatigue has all but gone. Nobody said it was going to be easy but i for one, am glad i did it.
Hope everyone is keeping on, keeping on.
Paul x

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stumbler
1 year ago

Great news, @paulmorrison


bas76
1 year ago

Great news Paul and so great hearing positive news like this. I was very keen to explore this avenue myself but was talked out of it by my neuro. Where did you go to have the procedure? If you don’t mind me asking how different do you feel now both physically and mentally. I hope you continue to see improvements, this fills me with so much joy and hope particularly as I have had a bit of a tough 2nd year with ms and relapsing. Please keep us updated and keep safe while you recover.


sam10
1 year ago

Happy to hear that. Keep getting better and better.


paulmorrison
1 year ago

Thank you @stumbler and @sam10. Hi @bas76 i had my treatment in Moscow, obviously apprehensive, once i had decided i was going to have it done but like you, my last two years of decline was pretty rapid. Although not counting my chickens yet, apart from the things i listed above. I now have a normal bladder, my cognitive fog has lifted. My family now has new sence of optimism. Good luck with your decision.


vixen
1 year ago

@paulmorris, this is so uplifting. I can’t imagine how it must feel to get those old faculties back again. Wishing you continued recovery…..


glawsdan
1 year ago

Hi @paulmorrison

Great news, thanks for the update. From the horse’s mouth is always best.

Dan


hmcampos
1 year ago

So good to read that @paulomorrison. Please keep us updated.

Wishing you all the best. Be strong!

H


grandma
1 year ago

Dear Paul so glad to hear your good news! Keep us posted we’re all wishing you the best👍


bas76
1 year ago

@paulmorrison, sounds like you have gained a lot back so soon after the HSCT, that really is fantastic. Sounds like you had similar symptoms to what I have, I was diagnosed 2016 and relapsed Nov 2017. I have recently changed from Avonex and just finished course of Cladribine tabs. I’ll see how it goes but I think I will seriously consider HSCT if I experience any more deteration. Just three things that bother me with HSCT, Cost, Pain and safety. You wouldn’t happen to have the website or details for where you had the procedure done? Thanks Seb


paulmorrison
12 months ago

@bas76 hi seb, i got all my information of the hsct face page’s, then rescheduled personally from their, by contacting people who had undergone the treatment. For me it was a choice between Moscow and Mexico. I went with Moscow and was glad i did, the care was outstanding. Costs- 50,000 usd, so depending on where you are, that can fluctuate. Pain- i didn’t have any, apart from returning with steroid phycosis, which was a pain for my family. Good luck with your decision, for me i wished i had goon sooner.


bas76
12 months ago

@paulmorrison Thanks for the info Paul I did speak with Mexico HSCT about 2-3 months ago but sounds like Moscow may be a bit cheaper and is also closer for me in the UK. Do you wish you got it sooner as the results are so good or because you think it would have been an even better result? Just curious as my concern is waiting too long and progression kicking my ass lol. Just started Cladribine so I may have to wait for this to take its course.

I’m so happy to hear your feeling better than before, just that alone is great! Please let me know how you continue to recover would be fantastic if you went back to your pre ms self fingers and toes crossed for you pal.
Seb


paulmorrison
12 months ago

@bas76 i wished I’d had it sooner, only because i wasted 18 months of my life! It seems i had ms for twenty years without knowing. The last attack before diagnosis led to the disability. My primary reason for having hsct was, to halt progression. The function i have regained was a bonus. If you do go to Russia, your be in the safest hands with dr fredreko and his team. Have you tried to get it on the NHS. AIMS would be work contacting, an organisation that helps people to get hsct. Stay well, Paul.


aabreu
12 months ago

Hi Paul. I sent you a private message. Sorry didn’t get back to you sooner. To be honest, I have been avoiding the site. I feel very fortunate to have had this procedure and my insurance cover it. This was the best decision for me. I’m glad I did it. I only wish others had the same option I had. It saddens me. Hence my avoiding the group. If anyone has a question, I can try to help.


grandma
12 months ago

@aabreu, please don’t feel guilty and avoid us, we celebrate all victories. We’re very Lucky in the UK because money makes no difference most of the time but we do suffer from what we call the ‘postcode lottery’ so it can depend on where you live, but to a certain extent the same can be said in the States/Canada because every sate/area has its own rules but please don’t avoid us in futute😍


stumbler
12 months ago

@aabreu , I echo @grandma ‘s view, we celebrate all MS victories. So, we’d be pleased to hear your experiences. 🙂


bas76
2 months ago

@aabreu I’m a bit late to the party and just read your post. We all love hearing success stories like yours it’s a good thing for both you and us too. Be great to know how your getting on, hope all is well.


aabreu
2 months ago

HI @bas76
Thanks for the interest.
I just had my 1 year follow-up.
I have had many improvements over the past year. I am back to some of my old hobbies. Flying little airplanes is a big one.
The sensation in my hands is still a problem. The Neurologist said I have about 2 more years to see how this annoying symptom ends up. He recommends stimulation/exercise. A reduced vibration sensitivity is the root cause. I know it’s improving though.
Other than that, I don’t have any real complaints. Things are improving rather than degrading. What else can I ask for?
Some big trial results were published on the HSCT procedure earlier this year. It showed the procedure was much better than all the drugs out there. I thought there would be more interest after this publication. The focus is still on the DMDs.


bas76
1 month ago

@aabreu sorry for the delayed response been busy with life and set up a Go Fund me for HSCT just 4 days ago. Going well at the 2.5k mark, hopefully I get back into work soon and I can start saving toward it too. Sounds like you’ve got your life back buddy, that’s fantastic!! Makes you realise what little things we may have taken for granted like running for a bus 😂. Please continue to get better and look after yourself. @paulmorrison, I’m more determined than ever to get HSCT ASAP, hope all is well buddy 😄

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