rubeus7777 17/03/18
Last reply 3 months ago
Possible Cures in the future?

I hope they find a breakthrough for all Autoimmune diseases and rid it for good and that way we don’t have to suffer and we could live our life like a normal person would. I know they are still trying to perfect stem cell therapy the HSTC and I really hope they figure out something you know. Hopefully the greed of the FDA doesn’t prolong the possible cures out there. I hope everyone stays strong and hope for a change. : )

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stumbler
3 months ago

Hear, hear, @rubeus7777.


marcyg921
3 months ago

Agreed 100%. Though if there’s anything I’d like just as much, if not more, than a cure, is answers in how we get MS. Because not only will this answer my question, but also it can prevent anyone getting this horrible condition in the first place. Stay strong and lets all keep hoping.


aabreu
3 months ago

There are some very effective treatments that can put some people in long term remission. They all have risks. I recommend getting on something rather than hoping for a cure. Tysabri is very effective for many people. If you JC positive, it is a riskier treatment. Ocrevus is new and also has a lower issue with the JC virus. A neuro I talked to Thursday said Tysabri is his go to over Ocrevus.
Lemtrada is a short course treatment that is very effective. It seems to put many in remission. It is like using a hammer because there are other not so nice potential side effects. Like other secondary autoimmune diseases. I’m going in for HSCT. It is by far the riskiest. People die on this treatment. I’ve seen numbers from 1 in 500 to as high as 1 in 20. This treatment is more like the Russian roulette option. I was invited to the trial in Chicago Northwestern. I somehow meet the trial criterion. My EDSS has gone from a 1 to a 4 in less than 12 months. Time is not on my side. If you are interested, they are still looking for people.
Good luck.


rubeus7777
3 months ago

Ok I will definitely check this out and you are right about Tysabre and Ocrevus. To bad I do have the JC virus so I can’t go along with those therapies. Where is this center located and how do you qualify?


aabreu
3 months ago

Join this Facebook page. Look in the files section. There are instructions how to apply. It’s easy and they are fast to respond. I’m warning you. I’ve seen many apply on FB and not get invited to the trial. You need to have new enhancing lesions on the MRI. This shows you are breaking through your current therapy. You should not currently be responding to at least one second line DMD. At least that is why they invited me. You could travel all they way to Chicago for nothing. They give all kinds of reasons. They all seem upset about being declined. If you get invited, they will tell you to stop your current treatment. I’m on prednisone for three months until treatment.
They also need to think you will live through the treatment. So they generally want people under 55 I believe. Could be 50. Someone did die in November. It was a mother with young ones. Sad.

https://www.facebook.com/groups/burthsct/

Btw. You can still do Tysabri and Ocrevus with JC. I think they use a different protocol. I don’t know if Lemtrada though. I bet @stumbler has info about it.


mmhhpp
3 months ago

@rubeus777

Hi, what do you mean you have JC virus? Detected on blood or spinal fluid?

I was positive in blood but when they run lumber punture i was negative.

I would be on treatment it may not stop progressing but it may stop relapses

Yes we need a cure….my prediction will be 40 years…too many scientists messing around……


arknat
3 months ago

Any potential cure should include repairing the damage (remyelination). Just stopping activity and keeping what you have may not be enough/helpful for a lot of MSers. Nonetheless it will be a significant step toward cure.


rubeus7777
3 months ago

Years ago they have been working on myelin sheath regeneration and I think that ago. I’m surprised they havnet incorporated that in any of there treatment.?


rachaellouise
3 months ago

http://www.bbc.co.uk/news/health-43435868

Stem cells are looking more promising people . Don’t give up hope…
The trial in Sheffield has finished and showed rest results so I am optimistic!
Still think need to change diet and lifestyle too to stay well though.
The only thing that bothers me is their cherry picking people who can have it . You have to be really bad . I think it should be open to everyone with ms and it’s their choice wether to have it or not. Everyone should have the choice if they are suitable for the treatment .

Rachael x


mmhhpp
3 months ago

@rachellouise

Yes rachel very picky trial, they did not take me in last year when i could still walk now confirmmed i am spms with relapses and in a mess unable to walk and rapidly going down……hstc was my last option but now i have the hope of Cladribine which i hope i get…..very upsetting all this ms crap

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