Multiple Sclerosis: 'I won't have to take drugs for life'
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- Опубликовано: 24 июл 2024
- Beauty expert and RUclips star Nicola Chapman Haste tells Kay Burley about the new treatment for MS that she has had in Mexico.
HSCT (haematopoietic stem cell transplantation) is an intense course of chemotherapy that wipes out the immune system, before allowing it to regenerate without the damaging effects of MS.
While not currently available on the NHS, the aggressive treatment comes with a high level of risk.
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After taking almost 2 MILLION dollars worth of MS drugs and relapsing and progressing on EVERY one of them in 22 years, I had HSCT in 2017 and it stopped the progression of my MS. Now I get better every day instead of worse! It’s only four days of chemo and was a cake walk compared to decades of this cruel disease. My only regret is not doing it sooner but here in the US we are made to suffer at the expense of big Pharma. I had to leave my country to save my life.
Hi Donna can I ask how much did this cost?
@@AH--173 why be so negative when its some peoples last option. Im currently being assessed for HSCT, and granted, its got alot of risks (my neuro said 30% mortality rate), but its not a useless treatment.
@@emilybarrett464 If death is one of the options of HSCT treatment I'd still go for it. Death would be much better than the unstoppable slippery slope I'm on day in, day out now ...
Thanks for sharing Donna. I'm earlier on in a PPMS diagnosis (58) hoping that HSCT is an option. I may do Ocrevus for a year or half year even ten hopefully HSCT. HSCT is being discoraged so far because I have PPMS. Although I trying to learn and take in different expert perspective as well as testimonial - especially from the PPMS camp
This is so true . Keep us sick while big pharma gets rich.
I had AHSCT in Mosco in 2019 and it has given me my life back. No more wakening up in the middle of the night worrying if the strange feelings was a relapse. Best decision of my life. I wasn’t going to allow my daughter to be my minder at 13.
How is it going now?
Vincristine is a vinca alkaloid with formula C46H56N4O10
Vincristine Sulfate, USP is a white to off-white powder. It is soluble in methanol, freely soluble in water, but only slightly soluble in 95% ethanol.
C62H111N11O12
C6494H9978N1718O2014S46
@@proudman6651absolutely fantastic - I have had my 4 year MRI & no progression - still on no MS medication - life is great 😊
been watching her since early youtube days....she is an inspiration not only in makeup application and style but humanity as well...i wish her the very best on her journey and admire her tenacity to spread awareness of this horrible disease and treatments!
I have fought MS for nearly 50 years.
This disease is so difficult. I can’t deal with it anymore. I might get this treatment as well.
I'm so delighted Nicola has found something that will probably work for her. I had been trying to find out how she was coping with her MS so this is very positive news. I wish her the very best and a complete and permanent recovery.
Nic is so wonderfully articulate here and such an inspiration to share her story
That’s amazing. I’m so happy for her! It’s a delight to hear the relief in her voice.
Well done on raising awareness on this treatment. This is extremely important.
Fair play to her. Hope it does something amazing for her.
The whole pixiwoo channel seems to be gone. I hope Nic is doing alright.
That's how I ended up here. Was in the mood to watch old Pixiwoo vids.
@@QuietlyCurious I was just looking for their videos right now and found this as well. They were the best!
spot on - ridiculous this isn't used yet in europe / uk - absolutely insane! This needs more coverage!!
it is used in europe, check out lithuania, norway or sweden
@@harmcity9934 norway and sweden are in the economic union, not eu xD Perhaps I need to look into the Lithuania treatment options in that case. I live in NL and am stuck with the escalation model sadly :( they give me average drugs and wait for me to get worse before allowing something that works better...When i asked if i could get ocrevus my neuro said "oh I wouldn't do that, we had a patient that died from it"... great bedside manner
@@__Wanderer i live in lithuania and it is compensated here so there should not be a problem, they also have it here for cash but it's roughly the same price as in mexico
Used in UK on private hospital for £90,000
@@thres34 seems like a more reasonable option. Most MS meds cost insurance / tax payer 10-20k per year for someone's entire life... a 90k treatment would be cheaper + likely allow someone with MS to work longer with fewer relapses... seems like a win win. I half believe pharma companies are holding back HSCT use because of this... Personally still on my first treatment (tecfidera/vumerity) - as soon as I see any changes on my MRI I want to escalate to something better...
Praying for her!!!
Yes Nic! So proud of her.
Please let us know details where we can get treatment
This is genuinely good news. I had a friend that had to live with this for a few years until he sadly passed away.
The 'treatments' seem bloody awful, folks have been campaigning for years for the development of better medications, while having to live with this horrible condition.
If only the government put anywhere near as much effort into treating MS as it did for coronavirus...
I chucked my 'Brabio' injection after a very bad reaction.
When they gave me the original Copaxone' I decided just to go without and after two years little if anything has changed, thankfully.
Pretty useless' is a good description of the NHS in my book.
My friend was 35 when she died of MS.
ruclips.net/video/6mcV_sOH8Gc/видео.html
@@badfairy9554 sorry to hear that, but thats not very encouraging for us with MS to read. Like i hate it when i tell people i have ms, and the response is that they know someone that died of it. Might be s shock, but that’s hardly music to our ears.
Probably because ms doesn’t have the same effect on the economy as a global, contagious pandemic does.
Hoping to get this done one day!
I hate MS! i saw it afflict my mothers cousin and one of my workmates, anyway on a positive note i hope more people will go ahead and take this treatment, at a 80% success rate things are looking pretty good for most of the people who try this.
The big pharmaceutical companies would rather people be forced to pay thousands of dollars for a lifetime supply of drugs rather than a (hopefully) one off treatment. I think Nic knows that too but couldn't say that on air.
God bless you
How did they administer the HSCT? IV or intrathecal ?
My wife flew to Russia 4 yrs ago to have this treatment. It's amazing treatment.
How is she now..
Yes how is she?
my wife has ms my wife is small she is only 7 8 stone they told her that hsct would kill her can someone give me some clarity weather it would help and how coild we build her ip to survive the chemo
l was diognized with MS. l feel very tired and exhausted, fatigue.
l go to Mater Dei Hospital for drip steroids every 4 weeks.
l take Avonex injection every Friday at 6.00pm.
l take the injection myself.
To stop it from continuing killing me.
Please pray for me... THANKS...
keep strong
🙏🏾🙏🏾🙏🏾
🙏🙏
Is this used for PPMS?
How she doing now?
Wow I never heard of this treatment. I’ve been taking LDN for the past 7 years. It’s off label but all the MS drugs were too scary and unaffordable in the USA.
Not all are unaffordable in the US. Theres federal assistance programs that covers the cost COMPLETELY with certain medical insurance. 100% FREE.
@@aba1791they dont offer it in the US?
Awwww we love her ❤️ 💕
3:31. And there it is 🤷🏽♀️
They will never have to take drugs again … pharmaceutical peddler’s wouldn’t want this loss of revenue.
Im going to have this done the end of may 24. I am so looking forward to this .
I will be praying for her and that the US catch up to many of the treatments that other countries have already approved and proven viable
We have it (Northwestern). It’s just that without insurance or for foreigners, it’s much cheaper to do Mexico or Russia
2:26 Er, neurologists already KNOW about this treatment, as they did trials on it a decade ago.
The problem with this country is FUNDING and always has been.
I stopped taking my Copaxone after having a reaction to the cheaper 'Brabio' brand and I'd just had enough of injections.
What I want and NEED is proper painkillers and anti-spasticity drugs like Sativex ( cannabis-based ), but they want you to try lots of other drugs first, which never work.
WHY does this country always have a problem with giving out certain medicines, where others just get on with it?
No wonder people go out and just buy cannabis from the street and who can blame them?
Because doctors are being paid by pharmaceutical companies to perscribe these drugs, even if they don't work/have a lot of side effects.
@@carlosfurtado1164 that's exactly right.
Some of the drugs they give have side effects of dystonia, parkinsonism and tardive dyskinesia. 3 similar conditions on to of the already ms.
A lot of the medication has aluminium Lake or aluminium advents..
Just not nice of big Pharma to recommend to the doctors that we take this rubbish..
A really good way to checkout possible side effects from medications, the studies are in PubMed. Example MS, supliaments, medication, adverse reaction pubmed.
My father had Ms I lost him at 18. This is unreal I hope it's as good as she says
It is! I needed bilateral support or a wheelchair in 2014. After HSCT in 2015 I no longer even need a cane and recently walked over 10km in one evening. My life has been totally transformed.
@@mindywatt8815 so after this treatment does it allow the the nerve cell coverings to repair, it doesn't just stop the damage?
@@mindywatt8815 ps happy to hear it
My father is 53 he's primary progressive, i always say your very lucky to be able to talk and eat compared to a guy who's same age as my dad in hospital completely immobile everywhere. MS effects some worse than others.... it's super interesting.
That's so young to lose him. I lost my dad to MS when I was in my thirties. Terrible disease.
I am going for HSCT next week, my Ms makes me very hard to walk, keeping my balance. Update here after two months, how the treatment go.
How did it go?
I m also MS patient since 2022 oct
BREAKING: Disease talks for the first time, leaving scientists battled
My friend died of MS. She was 35.
@@chris1960 at the time the gov would not say one could die of MS.
@@badfairy9554You sadly absolutely can. People need to make sure doctors put it on the death certificates even if it is secondary cause. That means the numbers get added into the stats and that raises awareness, funding and research.
Hi@@Every1ShouldSparkle that is what her husband said. The one thing that has changed is now in the UK the goverment understand that one can die of fatigue.
@@badfairy9554 Medics have always been able to put MS on death certificates
My brother have MS from 2022 , he cant walk
We all need to fight to have insurance company pay for this in the United States to help them. Ocrevus is 60 thousand . Why don’t insurance companies pay for this . What can we do to have help with this cost ?
My 42 year old brother had Ocrevus infusion. No improvement.
Ocrevus is FREE with government assitance program. Ask me how I KNOW.
@@remnanttruth I’m sorry . Hope he finds something that works for him.
My beautiful Nic!!
They offer chemo based treatment in USA
Where?
Northwestern in Chicago
There’s no money in cures. How evil is that.
It’s disgusting.
There are plenty of diseases for which there is no cure. Curing what we can won't make a bit of difference to big pharma's bottom line.
Absolutely true and lots of people have specialty jobs they don't want eliminated ...
I have ms and was given a lot of different medications which has resulted in me starting with anal cancer and having strokes. I take nothing now for ms I live with what I have been given
So sorry to hear that. Do you have any idea which medication gave you the cancer?
Look at a book called the wahls protocol
@@judtindouglas9051 I will thanks
@@clairehanson2036 also has a Ted talk on it, on RUclips
They use us as guinea pigs, which is why I don't take anything now either.
Two years without treatment and still OK so far.
I think the news host was trying to hint that the expense is criminal...
It's not just MS. Mexico was the first country to efficiently treat HIV and promote Hormone Modulation treatments for cancer instead of chemo. It's all about the money. Rich countries are holding off efficient treatments because it makes a lot of money to just sell drugs. Russia just came up with the first ever reversive treatment for glaucoma. We can't expect our country to provide us with everything we need anymore. We need to push for stem cell research, it's the key to cure most diseases.
Russia abd Mexico aren't regulated aa closely as the UK, hence they just run with this risky treatment.
My daughter was duagnosed 3 years ago and is stable on Tysabri. Shes lucky to gave a brilliant supportive Neuro consultant and specialist nurses.
Shes run several half marathons since her diagnosis abd is runing the London Marathon for MS UK next year. I am so oroud of her!
👍
Is that theory that MS is a viral infection that hasn’t completely healed or a post viral disease like ME/CFS and Long COVID? What is the chemo killing off?
MS is an autoimmune illness not an infection. Many things can trigger your immune system to attack your neurons. There are theories that following certain infections your immune system goes into overdrive and can attack your own cells, among them your neurons. This treatment targets your malfunctioning immune system. To put it simple it kills of the white blood cells then replaces them with stem cells that develop into your new white blood cells. After this treatment your immune system won't attack your neurons anymore.
ruclips.net/video/9hJA0lGsIKI/видео.html A RUclips video about the possible link to ESB and CM virus and MS.
Sweet and lovely lady 💖
Truly hope this works for ya.😁 If it only halts progression, I think I'll pass.
I don't mean to sound overly cynical but what doctor wants a healthy patient and not wanting pharm in$entives? I have M.S, and I control it with diet and make sure my B vitamin levels are where they should be. I rejected Rebif years ago and never looked back.
What's her RUclips channel name?
Try Pixiwoo or Nicola Chapman
@@jayare6804 pixiwoo seems to have vanished off the planet. Very odd.
@@sarahtaylor7737 Sam is back on RUclips (Samantha Chapman Andrews)
I'm going in two weeks.
Hi, how did it go ❓
@@CarolCreates I've been home for just over a month. The month I spent in Mexico was very difficult, physically, emotionally, spiritually even. At the end of that difficult month I walked without my cane for the first time in years. I no longer feel out of balance. There are muscle groups all over my body that are working for the first time in years. HSCT worked for me. I do not feel like I have MS I feel like I am now recovering from the effects of having had MS.
Keep us update
@@ckahlquist2129 Fantastic news. Spread the word and stay well
its a pretty revolutionary idea
i believe it was the NHS that discovered this treatment.
how ironic that it's not available through that very service for the people who paid for it to be developed.
yall are becoming more american each day
This treatment won't work for people who have primary progressive/ It will probably work for newly diagnosed
Sorry, but incorrect info there. HSCT works for all types of MS, the success rate and chances of improvements are lower than newly diagnosed yes but it does work at halting the progression rate. x
ruclips.net/video/6mcV_sOH8Gc/видео.html
She was diagnosed years ago.
I was diagnosed 16 years ago and I’m now 3 years after treatment and no progress.
@@lozmurphy7961 glad to hear that 🤗✨
Tbh I don’t like the chemo aspect. Did u find it physically and/or mentally exhausting?
Any side effects?
Freaking FDA sucks in the US
The FDA and the CDC are totally corrupt and owned by the pharmaceuticals.
My sister is 32 years old and she has suffered from meniere disease for years and she always complains to me that I had to bought her Dr Madida herbs I saw on RUclips and she is telling me last month that she is cured completely and don’t long have the symptoms like vertigo or dizziness, feeling of fullness in the ear or ringing, hearing loss, imbalance, motion sickness, nausea, or nystagmus.
#SharingIsCaring!!!
👍🇺🇸😇💧💦🌊🌈🌎🌍🌏
The interviewer low key questioning how a country like Mexico can be a leader on fighting MS. She is so ignorant and full of herself. But happy for Nicola Chapman
Walking myself was difficult for me because of my parkinson health situation but am happy that Dr Madida medicine on youtube I was able to get cured. Now I can walk properly🙏🙏
Surely the years of drugs for MS must be more expensive than this new treatment which seems to be only for a few weeks. 🤔
Everyone has MS in a different way? No
" Not the Russians or the Mexicans ??" Did this racist just say that ???? 😳😳😳😳😳
I'm mexican, and i though the same 🤨. The interviewer feels rude since minute one.
How is that racist?😂😂
Typical... it's all about money...
How much orgeano do u need for the sauce
A pinch or two should do the job
The way she compared the Brits and Americans to the Russians and the Mexicans was very poignant and biased. Her racism showed.
Lol Americans Russians Brits and Mexicans aren't races.
How was she being a racist??
a "beauty expert" is not a thing.
Yes it is. A very very lucrative thing.
Not a fan of the skin head look, millennials baffle me
She had chemotherapy, mate.
@@zizia9060 oh
😅
she’s 41, not even a fuckin millennial mate.
@@Corn22 she actually is but literally only just, Millenials were born 1981-1996 😁
It's either infection from bacteria or virus very hard to detect
Goes to show what big pharma is all about Well done Nicola
I had AHSCT in Mosco in 2019 and it has given me my life back. No more wakening up in the middle of the night worrying if the strange feelings was a relapse coming on etc. Best decision of my life. I wasn’t going to allow my daughter to be my minder at 13.
Hello ! How much în the price of this procedure in Moscow ?
In 2019 it was £45k I think it’s over £50k now.