Stems Cells BBC Breakfast

All I can say is that this seems very promising and if a Professor is excited then so am I… we all want to stop MS and this may be a chink of light.

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You can be diagnosed as SPMS with relapses !

Being SPMS doesn’t 100% guarantee no relapsing.

So on that note, would someone with a confirmed diagnosis of SPMS With Relapses be in the same criteria as someone with RRMS ?

I am truly confused now ! I thought rrms was defined by having relapses. I am confused by the idea of spms with relapses. I Assume , (sorry if it’s an incorrect presumption) that that’s what you have been told you have. And along with this diagnoses it’s been explained to you.

Any info would be fab

RRMS is defined by its clear pattern of relapses and partial or complete remission from those relapses. SPMS is generally considered to be a phase of the same disease which is characterised by steady disease progression rather than relapses and remission. Except that some people transition from RR to SP and while they do seem to be steadily progressing (which can be very slow progression or faster, depending on the individual), also experience relapses - presumably also with incomplete remission. I suspect that it’s just typical bloody MS behaviour. The minute you think you have a handle on the disease and its varients, it goes and throws something random into the mix, just to mess us all up and confuse matters. This ability of SP to sometimes continue to throw up relapses is a good reason why many consultants are wary about defining a person who is on a DMD as progressive. If there is any possibility of a DMD continuing to protect against relapses, a good neurologist will want people to stay on it. Once it was determined that I was not going to be able to tolerate any more DMDs, my neurologist pretty quickly announced that it looked like I was in a ‘progressive phase’. It was fairly obvious before he actually announced it, but I think he is a doctor who believes in covering all the bases where possible. In my case, I’ve not had a DMD for 2 years ish. And even then, I hadn’t been on any DMD for long enough for any protective action to have helped me, so it’s more like I’ve not had a DMD for more like 10 years. It’s certain that I am now progressive. Also, that I am not having, not likely to have, any further relapses. To which I say halle-bloody-luiah. The last big one 6 years ago took away my ability to walk. Sometimes SP is a relief. Especially if you’ve had a lousy history with DMDs. I’d rather be slowly deteriorating rather than suffering any more disabling relapses. To be doing both could be utterly hideous. Sue

HSCT has been successful in halting progression across all forms of MS in approximately 80% of those treated. The treatment is aggressive, but I’ve done it and whilst it is tough, and recovery is tougher, it is worth it. I now have hope for a future that doesn’t involve complete dependence and early death, which is where I was fast heading.

Both Kings, Hammersmith and more recently Liverpool have been treating patients with SPMS and PPMS. If any one is looking for information, check out the Facebook group called UK HSCT for MS & Autoimmune Diseases

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There are rumours that anyone doesn’t sing from the evangelical hymn sheet on these FB groups are removed, so the view is always positive.

For an opposing view, see the Barts blog:

http://multiple-sclerosis-research.blogspot.com/2018/01/is-hsct-for-everyone-or-not.html

ALL the PPMS cohort had progression by 5 years after treatment.

I know I’ll be trolled for this, so am going anonymous.

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There is a write up about Caroline Wyatt’s experience, who is from the BBC and paid to go to Mexico for the treatment, on the BBC website at http://www.bbc.co.uk/news/resources/idt-sh/caroline_wyatt_multiple_sclerosis

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It’s a shame you feel you will be trolled. I’d say that anyone considering HSCT should check out every source of information as no source is completely unbiased. I certainly carried out my own due diligence. The most compelling information for me came from meeting and chatting with people who had already undergone the treatment. I don’t think you can beat first hand experience.

I would say that the Fb groups are passionate, though evangelical is pushing it a bit far. They are a source of up to date information from past and present patients for treatment both in and out of the UK. Barts have their own view and they are very anti treatment outside of the UK. Neurologists and MS nurses generally are not up to speed yet and will often say it isn’t suitable treatment and is too risky. This view is now contradicted by the trial results. The MS Society is maintaining the view that it should be a third line treatment when all else has failed.

Clearly I am an advocate of HSCT. I believe it should be available as a first line treatment for all pwMS as soon as diagnosis is made. Accurate and up to date information should be available to us all so that we can make the right individual decision for ourselves. MS is no respecter of DMTs or neurologists who say “wait and see”. The choice should be our own.

Just a note that the Barts link here refers to HSCT for scleroderma, not MS. The ms mortality rate is 0.3% and the success rate across all forms of ms averages 80%.

I don’t quite get why it should be seen as a third line treatment?

Surly the choice weather or not to go for such an aggressive treatment should be the individuals.

Only the individual knows how they feel, stress of fear of what might happen v risk of treatment.

i know for me the ‘fear’ of what relapses may do to me is the worst bit of ms.

I completely agree Sarah. HSCT is an aggressive treatment, but then MS is an aggressive disease. I wish I had known about it sooner, then maybe I wouldn’t be as limited as I am now.

No, read further down, the first trial was for scleroderma, the second was for MS, with a graph breakdown of how many pwMS had the treatment and then progressed, broken down by sub-type (graph C).

Everyone with PPMS had progressed after 5 years.

PPMS is not RRMS.

I wonder if it’s even the same condition, as MS is just a description of how you are after the damage - it’s a bit like seeing people who’ve lost a leg, and assuming they lost it in a car accident - whereas some people will have lost it after being in a train accident, if you follow my analogy. So preventing further car accidents (i.e. relapses) won’t help you if you travel by train (i.e. have PPMS rather than RRMS).

I think this article is well written, informative and balanced. This well informed journalist did research and took a decision based on this research and her personal feelings. Read to the end of the article and she says how she feels 12 months after the treatment.

Really interesting and whist she is not making a case for or against treatment, she openly describes the good and bad stuff.

It is a bit worrying that some folk read 1 sentence or headline and start jumping up and down (figuratively) about a “Treatment” which whilst promising is not an unqualified success.

Mick

I think the titles of RRMS, SPMS, PPMS just make things more confusing !

When first diagnosed, like most people I was RR, now about 6 weeks ago after getting worse over the last 12 months I’ve been told that I’ve "most likely transitioned’ to SPMS, and probably had a relapse around 6 months ago when things were particularly bad.

When the neuros follow up letter arrived it said, Disease status : SPMS WITH RELAPSES.

Straight away I was gutted that I had “progressed”, but in my heart I already knew, however today when I really look at those words they actually mean nothing, especially after whats happened to my sister over the last few weeks !!

My sister is still classed as RR, yet her last relapse 2 months ago has left her in need of full complete care, needing help with eating, no use of both legs, clawed hands, fully incontinent, and barely able to talk.

So being RR initially feels the safest option, but in reality it only takes one bad relapse to totally change everything.

On the scale of MS and on paper I’ve progressed, so you immediately think you’ve got worse, which ok in a sense you have, yet my sister who on paper is still RR and could be regarded as lower down the scale is in fact in a far far worse physical condition after this relapse than I am now.

So my way of thinking is your actual MS title breakdown means very little.

MS doesn’t have boundaries or rules, if it wants to slowly progress you it will, but on the other hand it it feels like throwing you a life changing curve ball it will do that as well.

Just my opinion !

All too scary !!! Really really hope your sister gets good ‘remission’. Big big hugs

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The trial of 281 was also carried out by Dr Burt approx 15 years ago. It used a different chemo protocol so the results are not relevant to the trial carried out now.

Dr Fedorenko in Moscow has treated more than 1000 patients since 1999 - more than any other doctor in the world. His results demonstrate up to 95% success rates for RRMS and over 60% for PPMS. Average rates across all forms of MS with him are 80%. His mortality rate for MS patients is 1 person who had a severe allergic reaction to either the chemo or an additive in the preserved stem cells. His pre treatment testing protocol has since been adjusted to include testing for the same allergic response.

Here is an interview with him. First hand information from the person with the most experience of HSCT for MS and autoimmune diseases anywhere in the world.