Just tried to watch it but couldn’t get past the first 5-10 minutes because it brought back very unpleasant memories of doing chemo for lymphoma 5 years ago.
i’d have to be very sure I was going to get something out of it before contemplating all that.
But great if it does prove successful for a lot of people.
Nothing works 100% and MS is the wrong condition if you are looking for certainty.
Oh I’ll try another disease then and give this one back shall I lol !!
Or maybe just buy into all the could be’s and maybe’s . LDN 200 + p/a Biotin 200 + per annum , viamins D, B, magnesium et al 300 + per annum and on and on it go’s and at the end of the day I’ll still have ppms and I won’t know if the above did any good what so ever.
There will eventually be a cure though. Maybe when they’ve exhausted all the snake oil options and no one buys them anymore !
We all want a treatment , desperately, but new so called treatments come up all the time and have done for decades . One of the first ones was injecting yourself with raw liver , it was all the rage in the 1800’s with people claiming others had been virtually cured, they had even witnessed it themselves. What could you possibly use to just try it !!
If you don’t mind me giving you some feedback nw1. You seem very angry and negative. People on here are only trying to explain and give facts. Whammel has looked into this in some depth. I am not desperately looking for a cure as you say. I have accepted my lot. I am sure one day there will be something to help Ppms but for now I us live my life. If you do feel angry a lot of the time that is not good for your health. Anne
I’m sorry NW 1 but your negativity and challenging of other forum members is very difficult to read and unhelpful. You obviously have your questions but they’re better aimed at the neurologist who hasn’t recommended you for the treatment.
I was initially reluctant to watch it after I heard it was for RRMS but my curiosity took over. I think the treatment is obviously very difficult to go through but it gave me real hope for those who get dx in the future. As we all know, there is thought that ms possibly has some genetic cause. My daughter has already been tested following worrying neurological symptoms, and the fact that she and any others who may develop ms could be helped, even temporarily is very positive.
I hope the long lasting effects are positive, like Anne I’ve accepted that I probably won’t be cured but continue to remain positive and live with it as best I can.
Take care
Cath x
Oh I do apologise for expressing a point of view which is against one of the popular forum regulars.
I wont bother coming here again. Happy !!!
I’m sorry if you feel that way. I would not like to be the cause of anyone leaving the forum, everyone with this illness needs support and we have a friendly atmosphere where we try to respect the views held by others. I don’t like to criticise anyone and apologise for any offense caused.
Cath
I don’t actually think that nw1 is being unreasonable or negative, just opinionated, and I tend to share the opinions. I don’t think that wiping out your immune system with the stem cell business is the panacea for MS; perhaps it’s helpful in early stage MS, but does it stop progression? That is not known.
I am much more interested in research into Epstein-Barr, i.e. the Charcot project (on the Barts MS blog). And in development of neuroprotectives.
I was so delighted to get on the STREAMS trial as it was a stemcell trial, with no chemo! So that calmed down my Mum’s panic (after she’d searched online and ended up reading about HSCT), it was a trial I wanted so much.
As that didn’t work out for me, it does make me even more nervous about the idea of HSCT… I just have a lot less faith in it now. When they say ‘reset’ your immune system, they actually mean ‘destroy’ it, it’s just so dangerous. I don’t think that really came across on TV. The thing that made me cry was when the first person viewed their MRI post treatment…probably just because I can’t imagine seeing no lesions, that was wonderful Definitely worth a watch but definitely would have sounded like a cure, to the man on the street and that’s quite sad. I even posted a link on facebook to the BBC news artcle, pre-warning my friends it wasn’t a cure so please don’t believe the hype.
My blogs here by the way: Medical stuff update - my MuSh
Sonia x