Forum

Panorama programme

I should feel excited about the whole thing but for some reason I’m not!

And what type of m.s. did the guy who went cycling/kayaking have?

I’m confused about the whole thing. The chap who went cycling had only been diagnosed 12 months but he was bedridden before treatment. I am pleased for all who have done well but there seems to be lots of contradictions by the professionals regarding criteria.

Shazzie x

I’m not excited, because I know for sure I will not be putting myself forward for it, and even if I changed my mind, I doubt I’d get the backing of my neuro, unless things had taken a very marked turn for the worse.

I’m more ill than anyone would wish to be, but nowhere near ill enough to consider a treatment that might result in death.

Many people (including me!) consider about a 1 in 1000 (if you test positive for the JC virus) to 1 in 10,000 (if you don’t) of PML with Tysabri to be sufficient grounds for reluctance, but those risks positively pale into insignificance, compared with about a 1% chance of death!

I’d really have to be at the end of my tether, and thinking there’s a good chance MS is going to kill me anyway, before those odds started to look acceptable, or even attractive. For anyone whose predicament is less than desperate, I don’t think the case is made.

I dare say safety will improve, but how can it ever be completely safe to erase someone’s immune system, however temporarily? I’m not sure how much safer that aspect can be made, because it’s always going to be a risky thing to do. And now we face an era of antibiotic resistance, so it will no longer be so reassuring to say: “IF there’s an infection, we can always control it with antibiotics.” Maybe, but not necessarily anymore.

Tina

I agree with you Tina, my MS has me in bed nearly 24/7 but i would’nt even take the risk, my partner said if i were to have it knowing my luck it would kill me,and hes right, nothing ever seems to go right for me.

It seems the earlier you are diagnosed the better for this HSCT,and i am sure it will become safer in years to come.

But reading about it on the HSCT forums even people with aggressive MS who have had it a long time and with a lot of damage seems to get benefits too.

I suppose they will have a cut off age too,and i am 58 this year,so i dont suppose i would be able to have it,even IF i wanted it.

J x

Here is the criteria for the trial, so presumably he qualified ok.

1 Like

With you there Tina. I don’t really like the sound of it.

I remember chatting about this at one of my outpatient appointments and I didn’t like the sound of it and truly wondered how safe it really is.

Shazzie x

Not very long after I was diagnosed, an acquaintance much more severely affected than me (completely paralysed, in fact) was very excited about this. I don’t know if you remember, but there were trials going on in Bristol - probably still are.

Her husband rang me to say: “Quick, turn on the telly - it’s on the local news!”

They then wanted to know if I’d be putting my name down. In her place, I absolutely would (I wouldn’t be surprised if she has died now, as it was looking that way). In my place, I absolutely wouldn’t!

Horses for courses.

Tina

x

I feel like you - jinxed!

With all these things, we’re always told the chances of anything going wrong are “very small”, but I don’t think between 1 and 2 in 100 is “very small” - especially if the thing we’re talking about is death! If it was: “You might get a headache” would be different!

Besides, the chances of getting MS in the first place are “very small”, but I’ve already managed that.

So I no longer find: “Don’t worry, it’s rare” as reassuring as I once did. Rare things - both good and bad - have happened to me - winning a lot of money in a raffle, and getting MS.

So unfortunately, rare doesn’t mean: “You can disregard it, because it will be one of the 99 (or 999) others”.

Somebody is still “it”.

Tina

I was planning to watch the programme last night, so tuned in, made myself comfortable, and suffering from fatigue promptly fell asleep and missed it. (Is that irony?)

Have now watched it on catch-up and read Whammel’s link. I don’t qualify on grounds of age, but that aside, I’d have to be much worse off than I am now to even consider it.

Ben

If I were eligible and thought I might get improvements like we saw on last nights programme, I would do it like a shot in spite of the risk of death. The only thing that might make me pause to consider further is the risk of worsening disability. Ultimately I’d still do it though, just the thought of being able to properly walk again, to be able to go anywhere without considering its disabled access, or availability of a disabled loo. To be able to go in the sea again. To do a whole load of things I can’t do now.

But I wouldn’t be eligible, I’m too disabled. I don’t understand how the guy who was virtually paralysed qualified, but clearly he did. Also, it seems that the best outcome is for those people who’ve had MS the least amount of time, plus are very fit at the outset. And the very disabled man was extremely fit to begin with. His muscles hadn’t had the years of wasting away that mine have had.

The real issue I have with the programme is that there were no down sides mentioned, no discussion of people with MS who wouldn’t qualify, and no mention of the fact that as it’s still a trial, it’s years away from being available to the majority of us.

Sue

1 Like

the programme wll be very annoying to all the people that have been banging on about this for years (myself included)

talked to neurologist last week about this very treatment, and again was informed that i dont meet the criteria.

As sue suggests “it years away” for the majority.

im still saving saving up to have it done privately but i feel it might take too long and that anytime soon i might not be able to work at a very physically demanding job.

Im sick of being told i dont “meet the criteria” and then being offered a load of drugs that can only be described as an embarrassment.

It bothers me that the medical desicions that matter are not being made by me. Why should it be up to a third party?

it is a widely known medical fact that nobody knows what causes this disease, so how can anyone claim to be an expert?

Can anybody tell me why i should be over-awed and feel lucky that i have these people on my side

The treatment is already available at Kings in London, if you meet the criteria. I think it is going to be difficult to stop now, assuming it proves to be acceptably safe.

1 Like

its more encouraging but i still dont meet the criteria " failed on dmd of high efficacy", im on the copaxone but at a push i could say its failed, still i dont think its there yet. its ok though i’ll just come back to it when ive developed some more brain damage, maybe they should make a game out of it, where you can save up your lesions like coupons from the most horrendous cerial the world has ever seen and if yeah get enough to cover the roof of your house then you might just get the hsct

wonder if this treatment could ‘reverse’ the damage which causes Alzheimers.

1 Like

I watched this, I found it kind of confusing, mainly because focusing on something for half an hour is a struggle for me. I mainly watched it because it was my neuro on it, was deeply weird seeing him on tv!

It will be nice if down the line this does turn out to be a valid treatment for future generations. This kind of stemcell stuff could be the way forward for many diseases? And as research progresses, you’d hope it would become less of a nasty process for the patient.

1 Like

The programme was encouraging but lacked detail about eligibility criteria and risks etc, so not surprised it’s left a lot of us feeling indifferent and confused. The most useful thing I found is the great links provided by Whammel. Thanks a lot .

1 Like