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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.
Joined: Sep 23, 2007 Posts: 160 Location: Lexington, KY
Posted: Thu Sep 04, 2008 5:32 am Post subject:
Wow Jaime,
This is awesome. I am becoming more and more convinced to go with hicy. Maybe I'll make the call today .
Marcia _________________ DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
Joined: May 04, 2006 Posts: 3371 Location: Mid-Michigan
Posted: Thu Sep 04, 2008 1:33 pm Post subject: Re: HiCy Relieves MS Symptoms
Jamie wrote:
Everything is fantastic.
Thanks for the link and thanks for the update on Mel. It's all good!
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Apr 27, 2008 Posts: 81 Location: Los Angeles, CA
Posted: Fri Sep 05, 2008 1:30 am Post subject:
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!
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.
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.
I have the same questions. Even in that article they stated this is the first generation. I applaud the people who were brave and choose to have this done. But I am not sold on it. I have yet to see anything that makes the treatment something that will be a real benefit for us.
I would love to be wrong also. I hope I am because this was one of the few treatments I believed in early on.
Joined: Jul 28, 2005 Posts: 1269 Location: Sydney, Australia
Posted: Fri Sep 05, 2008 8:53 am Post subject:
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.
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...
where some of the first nine dx with PPMS and SPMS? because am I the only one who is not overly impressed with these numbers? Now JH has treated 29 new patients? We won't know much about them for a couple of years now.
I don't know what the hype is about with this treatment. I think chris started posting and caused a big frenzy, according to him at one time they were having to get more beds and people were flowing in and out having this treatment.
Joined: Sep 23, 2007 Posts: 160 Location: Lexington, KY
Posted: Fri Sep 05, 2008 1:39 pm Post subject:
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. _________________ DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
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!
I am not the one saying this is a cure or claiming I don't have MS anymore because of this treatment. That's false. How can anyone make that claim? I won't mention names. Even with hicy there are people who where the disease has already reactivated, kind of an interesting way or putting it. I always though of as an exacerbation. hmm oh well
So if the disease "reactivates" they just go back and get zapped again with High dose of chemo.
The EDSS scors I see are hardly impressive. I have seen other people, myself included who have used CRAB'S and have gone up and down the EDSS scale. Does that mean we found a cure as well? I had this for years and been in a chair and now have no symptoms.
Why don't any neuro's recommend this treatment? Is it part of some evil conspiriacy? Must be.
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