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HSCT Panorama Bingo

Yes I’m up to 3 now and I agree Snowqueen it’s going to be difficult to deal with people’s expectation that we will all be psyched, here we go then!

Not one single phone call from family or friends. At the risk of sounding sorry for myself no one except my sister who also has MS gives a sh*t about my MS. My partner has read today’s Guardian, visited both The Guardian and the BBC news website and managed to miss the story on all of these places. He would rather watch the football than watch Panorama. When I saw the chap’s mother crying on the programme, my heart was breaking as my own mum cared but unfortunately she passed away five years ago. Interesting programme though. Love to all of you xx

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I had a few calls and texts. I think people were quite excited on my behalf which is nice. As for the programme itself, it could only be light touch in 30 minutes but I thought it was positive and can only be helpful in raising awareness.

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Hi, program was hopeful & I hope it works for those people that are offered it. Good to know that the powers that be are working on a ‘cure’. Helly x

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Typical BBC program. No credit to Dr Richard Burt who is the man behind the “new” Sheffield treatment, just a typical Panorama “Gosh! Gee Whiz! This looks like the answer!” sort of presentation.

Dr Burt has been doing this in Chicago for more than 10 years - with exactly the same sort of results.

As a treatment it will be no use to me - I am SPMS, and too old - and even if it was available for me, I would not think it was worth the risk (and yes, there is still some risk).

What this really is, is some hope for the younger RRMS sufferer. It was interesting that there was a brief mention of the cost - as compared to the cost of DMDs “for a patient’s lifetime” - but no real analysis. It seemed to me that for someone who could expect to spend more than four/five years on a DMD, this could really save the NHS big money . And that is cause for even more hope that more people may be offered the treatment.

Geoff

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My tally was up to 6 people before the programme! I’ve also been trying not to snap at people about it or feel patronised: do they think I am not aware of every single bit of ‘MS news’ around all the frickin time?!

[On a different but related note, I am losing count of the “oh my freind/cousin/colleague’s Mum/someone I met in the pub has MS” thing…and the ‘miracle cure’ they’ve found].

The programme itself was actually a good fly-on-the-wall type documentary focusing on the people (sucessfully) undergoing the treatment and I found it emotional to see others with a similarly aggressive form of RRMS to me. But as Geoff says, no real critical analysis of the treatment itself, the (very high: 1.3% associated mortality) risks, balance of costs, limitations, exclusions etc. It was a good start but I think a more ‘old school’ Horizon approach could be more interesting.

Good to see MS being talked about on mainstream tv though.

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The good thing about this programme was it highlighted MS during prime time TV so hopefully family friends and colleagues might actually start to get how scary MS can actually be. The bad thing is now they all think that there’s a cure!!! One day hopefully but definitely a step in the right direction.

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Hiya

Just one text but I have told everyone over the years that there is nothing for me and it’s always sounds bites.

I lived in Sheffield for 12 years and I was under Dr Sharrack and his little room offered nothing apart from 5 mins every year when I was RRMS.

I moved to the Wirral and became diagnosed as SPMS and applied for the ms SMART trial for my SPMS. Had a letter a few months ago, after waiting 2 years, saying I don’t qualify as the only explanation.

Sooooooooooooo. Your on your own kid … as usual.

Marty

My total count was 3. 2 before, 1 after. I expected more. As soon as they started to tell me I told them thanks, but no thanks - I’m not at the stage that I feel it is worth the risk. I am more like the guy with the balance problems (athough both hubby and I commented that my balance is worse) than the guy in the chair. The benefit in my opinion has to outweigh the risks.

I said to hubby before it started that I bet they wouldn’t go into the risks. Afterwards he was on the Reddit website and pointed out a thread on there which was saying the same things. The risks weren’t mentioned in the program, and are too high, and someone stated the figures at around 5% (although I know they think they’ve managed to reduce this down). He was shocked and said he doesn’t want me to have it done with a risk like that. It’s not worth it.

What are the risks of this treatment please? can anyone point me in the right direction of this information?

I’ve known about this treatment for quite a while - like most of you! but i have not looked into it in great depth.

Thanks. x

Going back to the original thread - not had one text,phone call, e-mail about this. As soon as the programme finished my husband rushed to switch the channel over to watch something else. He didn’t even discuss it with me.

I spoke to my mum this morning on the telephone and she said “i didn’t watch because i was watching coronation street”

That just sums up my family. They don’t give a s***

My children on the other hand were very interested and asked lots of questions.

If your friends/family have shown an interest it shows they love you.

Teresa.x

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My tally stayed at 0 ! Felt a bit gutted actually !! :smiley: But my mum won’t acknowledge she’s ill, let alone duscuss mine ! Best left unsaid. "Is this a good thing to watch? " said my wife. But it just reiterated how lucky I am to be fair. Could be worse. Obviously the wife is weathering the storm so she would see it differently. … Dew ya keepa troshin

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I agree with Teresa, it means they have an interest. Though it is very difficult when you have to keep repeating yourself. None of my family have rung. I bet they didn’t watch it. My other half slept through it!! Although in fairness he does work very hard.

It really is a difficult one I think. If people show an interest it can sometimes “get our backs up” but if they don’t ask we get annoyed too!

I know that if someone in my family, or my friend had a problem like this, I would look into it and find out all I could. Then perhaps I may just be able to help them in a realistic way!

Perhaps not everyone is like me? Only one member of my family actually ever speaks to me about i. AS for the rest, if I ever try to make a conversation about it, they immediately go quiet, do not respond and then change the conversation. You learn after a while to keep your mouth shut. However that is a very lonely place to be. Hence, how grateful I am for this forum.

TAke care all,

Anne

x

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This was in the Barts Blog yesterday.

“However it is also clear that there can be significant risks from this procedure, which maybe a 0.5-1% risk of death from fatal infections (the death rate depends on the centres doing the procedures and this has dropped dramatically over recent years, but do not do this with an unreputable group as the fatality risk can be much higher!).”

Personally, I strongly doubt this procedure would be available on the NHS if it were not considered to be acceptably safe and hopefully, the programme will reflect this.

http://multiple-sclerosis-research.blogspot.com/2016/01/can-you-stop-my-

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Thanks Anne. x

Yes it can be a very lonely place to be when you have to face all this on your own.

I too have learnt to keep my mouth shut…but sometimes it would be nice to get things off my chest and air my thoughts to someone close to me who is interested enough to listen.

That’s why this forum is good - i need to let off steam this morning about the anger inside me with my husband showing no interest in the programme!! Or more importantly - how this could change my life in the future as it impacts on both our lives - not just mine.

Best wishes

Teresa.x

I

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Thanks Derek for the info.

I’m interested but scared at the same time.

I’m doing well on Tecfidera but…always looking to the future and the next best thing.

Teresa.x

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A close friend of mine said she’d forfeited her beloved coronation street to watch it. It meant a lot as my family have never been interested in MS.

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Humbug - your friend is a true friend.

I am still fuming this morning - just need to rant! haha!

I am a mother myself and if my daughter had ms i would have been glued to that programme (not watching coronation street like my mother) and showing no interest like my hubby.

RANT RANT RANT!!!

I am slowly letting out my frustrations to you all! sorry !!!

but…starting to calm my rage…very therapeutic! thanks.

Teresa.x

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The treatment is already available at Kings in London, if you meet the criteria.

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I got a bit confused while reading the link you sent re criteria. It seems to contradict what the doc said on Breakfast yesterday morning. He said that criteria would include patients who were diagnosed around 1yr to 18months ago. And the chap they featured was bed bound and used a wheelchair but the link criteria said patients diagnosed under 15 years ago and being able to walk 20m.

Am I having another blonde moment?

Shazzie x

I have failed on Rebif but i am now improving on Tecfidera.

Because i failed a first line treatment i would think i would not meet the criteria for this yet. I would have had to fail on Tysabri/gilenya/lemtrada perhaps to meet criteria.

It’s really interesting that i meet all the rest of the criteria. If i don’t meet the criteria now and i waited until i am more damaged by ms then i might not meet the criteria later either if my walking ability declines.

I don’t think it’s for me at the moment but i will be keeping a close eye on the treatment.

My youngest child is only 11. I would find it very difficult to go away for a month and also the small risk that i might not come back. Very small risk i agree but it’s still needs thinking about.

Thanks again Derek

Teresa.x

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