This Is MS Multiple Sclerosis Knowledge & Support Community

http://www.jhu.edu/~jhumag/0908web/wholly.html#hicy

Our very own Chris Young ladies and gentlemen!

Mel continues to do well, her 3 month was v.positive, she aced the maths test for the first time ever, gait is better, walk test is faster and EDSS has dropped.

Heat really flares things up by they settle when cool, it's HOT in Houston, we've dropped the AC to 70 from its usual 75-77 and that has done the trick.

I'll update the blog properly soon.

Mel's back at work full time, and the best thing is she's running again. Slowly with a lot of walking but working out all the same, she used to run 10k's before the MS took hold.

Everything is fantastic.

Hopkins told us that no one (granted, only 11 months out) who has followed up the HiCy with Copaxone has had any signs of reactivation.

One lady from the original nine went from an EDSS of 6 to 1, after three years she's reactivated and crept up to a 3. They are redoing the HiCy then following with Copaxone to retrain.

In all primate models it's been impossible to induce MS/EAE after prophylactic Copaxone.

I know it's only 11 months but jesus I'm positive about this stuff.

Mel's number 22 I think of 29.

We go back just before Christmas, hopefully she'll be even better then.

Also today was the first day she went out in public, to work no less, without a headscarf on. Her hair is back! Boyish, but back.

It looks the same colour/texture but its still short so can't tell if curly or straight etc.

Onwards and Upwards!

Jamie

Jamie wrote:In all primate models it's been impossible to induce MS/EAE after prophylactic Copaxone.

I thought the CRABS cure EAE in the mouse model as well?

Wow Jaime,
This is awesome. I am becoming more and more convinced to go with hicy. Maybe I'll make the call today .
Marcia

..

Jaime - great news that Mel is still doing well.

It's well over 100 degrees here in southern CA...and I don't go "blind" in the heat. I feel a little more drowsy if I stay outside in this extreme heat - but nothing like before.

Thanks for posting that link...I love reading everything I can on HiCy!

Oh, and Dr. Kerr told me I was #26.

~Keri

So a woman went from a 6 to a 1 and now she's a 3 and has to do it again?
This is the problem: you are rebooted, but you still have a weakness, and it could just be a matter of time, when you get it again? Please correct me if I'm wrong, I would love to be.

If she was one of the original, she probably didn't have the Copaxone.

By the way, I don't have MS, and I get drowsy in the heat and feel like it is harder to walk.

Kyle wrote:I have yet to see anything that makes the treatment something that will be a real benefit for us.

I have not had this treatment, but it certainly still appears as one of the currently promising ones.

When you say you "have yet to see anything", what sort of "thing" would you expect to see for something that will be a "real benefit for us"? I originally saw the video of the girl that had the treatment that regained what sounds to be a lot of functionality (although we have no video of her before)

Remember, I am not one of the HyCy devotees, so please be blunt, I am interested.

whyRwehere wrote:So a woman went from a 6 to a 1 and now she's a 3 and has to do it again?
This is the problem: you are rebooted, but you still have a weakness, and it could just be a matter of time, when you get it again? Please correct me if I'm wrong, I would love to be.

6 to 1 to 3 was something of an exception during the follow up period





HDC was first used for MS some six years ago and if recurrence of disability was common place I don't think that anyone would make a secret of it.

Six to one to three, over two years, would suit me just fine. Myself, I am not enjoying six at all...

The statistics are taken from a pdf titled 'hdcnewest' which Leon originally posted.
The links to those files seem to have expired so I uploaded them to USAupload - not sure how long the links will last but they are very interesting indeed. It requires a captcha code and a 20 second wait...

http://www.usaupload.net/d/q516xravig8


For me HDC is the first treatment that has given me hope (although I have no idea how I will get it).

-edit- actually it's 5>1>3 EDSS here, maybe we're looking at a different study?

You have to put this into context Kyle. These people do not have MS anymore but the initial ms damage has already been done. Most of the patients that are in this treatment decided that the other treatments were not helping them and they want ms to stop. If you recover any abilities it's up to your own body. You don't have to be impressed but guess what...these people no longer have ms.

Kyle wrote:Honestly I have seen better numbers with tysabri.

Hey Kyle - could you post the figures? I was unaware that Tysabri's manufacturers have made any claims to it reducing EDSS'. I had a quick search and I couldn't find anything about Tysabri and restoration, only prevention, so please do post the studies.

I really don't know how these figures for HDC fail to impress - an average reduction in EDSS of two points is a big reduction!

(http://www.medicine.ox.ac.uk/bandolier/ ... /EDSS.html)

Kyle says a lot of things out of context that he can't back up.

Go on Kyle, you back up your absurd statement.