Last reply 1 week ago
Returned from hsct in Moscow.

Hi everyone.
As promised, I said I would keep people upto date on my treatment for hsct. I travelled to Moscow a month ago for the procedure. I returned home to my adoptive country of thirteen Years, Spain. I obviously reseriched Moscow before I went, but the standard of care and professionalism far exceeded my expectations. There is still a mountain to climb for me to regain back my full health but am more determined than anything in my life, to make it happen. I hope everyone reading this is well. Paul x

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californiadreamin
2 weeks ago

Awesome to hear! Best of luck with your recovery.


stumbler
2 weeks ago

@paulmorrison , good luck in the rest of your journey.

Please come back regularly to update us on your progress, and any hiccups on the way. πŸ˜‰


vixen
2 weeks ago

Hello @paulmorrison, great to hear that you’re OK so yes, please post updates. I guess someone went with you? X


paulmorrison
2 weeks ago

Stumberler, the work is only just about to start, I will be total honest to help others come to there own decision. Firstly,. I have been on full daily doses of steroids for a month, so I am swinging between being a phycopath to crying my eyes out, for anybody who knows me, I just don’t do (not the phyco part the cryingπŸ™„)


stumbler
2 weeks ago

@paulmorrison , what dosage are the steroids, and who is prescribing them?

Steroids are usually prescribed to address the inflammation causing a relapse. I’m just wondering what the purpose is?


paulmorrison
2 weeks ago

Hi stumberler, the first four days of steroids, are to promote your new stem cells. This all gos though a neck port. Once your stem cells have been harvestd from your lung area. Not your bone marrow, they are frozen at minus 200 degrees. You then have four days of chemo along side the steroids which are given to support the body. Then your new stem cell are re inserted at minus 200 degrees, Again through the neck line. After that I spent 7 days in isolation as I had no imunne system, still getting steroids. Once you’re blood levels are back up to a afr level. You are out of isolation, and the steroids are tapered down. The last thing you get, is a flush through. Of which I can’t remember the name but that’s for 7 hours. This gives an extra 5%. Success rate as it washes out anybr clinging t or b cells. I hope that hasn’t sent you to sleep πŸ€”


stumbler
2 weeks ago

@paulmorrison , I wouldn’t be that disrespectful. Zzzzzzzzzzz πŸ˜‰


paulmorrison
2 weeks ago

Thanks california dreaming.

Hi vixen. Yes I’m OK but there is still a long way to go but it’s doble. No I didn’t take any one I went on my own. I am glad really. Its sort of one big comunity.


paulmorrison
2 weeks ago

Stumberler, I know how much you like a good old yarn. The I wouldn’t be that disrespectful. Is jut all part of charm πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚


seanachai
2 weeks ago

Hi Paul

Wish you all the luck the world, stay positive, tough times ahead…. you made the the right choice IMHO

Be good to hear your experience of treatment in Russia……


paulmorrison
2 weeks ago

Hi Seanachhai. The treatment in Moscow was outstanding. In my opinion the protocol is perfect, the staffing is xceptional. The initial testing is vigorous, and two people were sent home as they were not deemed to be fit enough to be able to take the treatment. My testing started atv7
00am and Finnished at 9. 00pm. Feel free to ask any questions.


stumbler
2 weeks ago

@paulmorrison , Me, a charmer? lol πŸ˜‰

And, yes, do keep us updated with progress reports, as we’re all in your corner, willing you along.


lightning87
2 weeks ago

Glad to hear things went well in Moscow and they took good care of you. How long do you need to be on meds for after?

Can I be nosey and ask how much it cost?


rachaellouise
2 weeks ago

@paulmorrison – well done you !

Namaste πŸ™ respect

I saw a neurologist today and he went on about how they can kill you ! So negative ..
It’s not exactly a walk in the park to live with and theirs loads of great stories
Yours will be after rehabilitationans recovery !
Xx


paulmorrison
2 weeks ago

Lightning 87
The cost is 50000 dollars. Sounds like a lot but my wife raised it in three months. Proving if you want something bad enough your get it. I haven’t taken dmt for four months now, and hopefully not need to take gabatina and the rest in due course. Feel free to ask questions, without them you cannot make an informed decision.

. Rachel Louise

The treatment is carried out buy hemotologests. Most but not all niroligests don’t have a clue, about jsct. The death rate in Moscow is >. 3
….


paulmorrison
2 weeks ago

Rachel Louise. Hemotigistst treat blood Bourn illnesses like leukemia, hstc works by irradiation of your immune system including t and b cells. The death rate is 1 in 333, this is the reason why you are so comprihrmsivly tested. While I was there. Two people were sent home, due to the fact that they could not have taken the treatment given there health. If your wonder, if your sent back. You don’t pay, apart from the testing.


paulmorrison
2 weeks ago

rachaellouise
1 week ago

@paulmorrison – your very brave !
Did you have chemo ?

Your wife’s a star raising all of that in months . How did she do it in such a short space of time ?

Do you feel okay after your treatment ?

How bad was you ms before you went ? How often did you have relapses ?

Rachael x


rachaellouise
1 week ago

@paulmorrison – I was also wondering when you say your on daily doses of steroids what dose Is This? Don’t tell me it’s 500mg a day – they really makes me feel not great .
If needs must 😊😊


paulmorrison
1 week ago

It’s Taylord to the individual, firstly they are used to stimulate your stem cells, secondly to support the body trough chemo but they are high doses.


seanachai
1 week ago

@rachellouise

It is the chemo that does all the work in HSCT; the stem cell part can be confusing. There is work going on regarding stem cell engineering for MS but this is not HSCT. The purpose of chemo in HCST is to kill your existing immune system; thereafter regrow it with no MS, idea being your old immune has become compromised….the new one buys you more time before “potentially” becoming compromised again…. the potentially bit is up for debate as long term outcomes with HSCT not really known just yet, except to say most are free for 5 yrs + post HSCT ie MS has been halted.


rachaellouise
1 week ago

@seanachai

Thanks I am really interested in the engineered work going on with stem cells !

X


paulmorrison
1 week ago

Yes seanacha explains it really well. Its the chemotherapy that does the workhthogh
High does of steroids are given for two reasons. One to promote stem cell’s, and to support the body though the process. The four days of chemotherapy is the strongest stuff. I was ok on it, others were not so lucky. The stem cell’s are your own and they are nut altered, they go back in to help re grow your immune system. In moscow, they have reached ten years. Ms free. I was 5.5 edds but 30 months previous I was 0. Ive had ms for twenty years. Its a unpredictable beast.


bonang1975
1 week ago

Glad to hear it all went well Paul glad your home recovering, hope you keep us all up to date with the recovery and out come. AntπŸ‘

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