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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: Apr 27, 2008 Posts: 148 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.
Joined: Jul 28, 2005 Posts: 1999 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.
Joined: Oct 21, 2007 Posts: 519 Location: The United Kingdom
Posted: Fri Sep 05, 2008 1:01 pm Post subject:
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...
Joined: Sep 23, 2007 Posts: 286 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. _________________ Marcia
Joined: Oct 21, 2007 Posts: 519 Location: The United Kingdom
Posted: Fri Sep 05, 2008 2:51 pm Post subject:
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!
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.
Despite what researchers would like us to believe, the original discovery of the effect that high dose cyclophosphamide can have on MS is more the result of luck than skillful research or understanding the MS disease process.
With that in mind, what you wonder is among the things we won't be capable of knowing conclusively for some time
whyRwehere wrote:
you are rebooted, but you still have a weakness, and it could just be a matter of time, when you get it again?
but likely in any of these cases there are many factors involved.
One factor might be that, as when using chemotherapy in cancer, when using HDC against MS it's essential that treatment kills every last aberrant cell so that you are killing the disease rather than severely suppressing it and allowing survivors which might repopulate and recreate the original problem.
Not that it varies enough to be the total explanation but EDSS testing is very subjective and can sometimes vary by a point or two, even when administered by the same tester under the same conditions on different days.
Another factor might be that a person with MS has already proved to have the predispositions necessary for MS incidence. Even when a treatment is shown conclusively to stop the MS disease process, it's obvious that there are going to be a certain number of that predisposed population who are going to get MS again and there is know way of knowing if that would be in two weeks, two years, twenty years or never again in this lifetime.
Another factor might involve what seems to be a well known "fact(?)" (and someone else already mentioned it here), that because of the lasting MS caused damage to the neural networks, there remain factors which can cause the re visitation of MS symptoms, long after the disease process has been stopped.
Even a person who doesn't believe that Campath, Revimmune or Tovaxin are capable of stopping the disease process has to concede that when something is invented that is capable of stopping the disease process, it's only sensible that MS damaged and under capacity neural networks are going to continue to be negatively affected by heat, exercise, stress, sickness or anything which causes inflammation to reduce transfer in already restricted networks to the point that increased disability is temporarily noticed, well after the disease process has been stopped.
NOT a conclusive list of possibilities, but it's some of them.
Joined: Sep 23, 2007 Posts: 286 Location: Lexington, KY
Posted: Fri Sep 05, 2008 9:12 pm Post subject:
No matter what treatment you bring up there will always be someone who "throws stones at it". This one is no different, If your not impressed and you don't have any hard facts to back up your position just keep your typing fingers idle.
I think any drop in EDSS is significant and by the way EDSS does not reflect other ms issues like brain fog, fatigue, chronic pain. I could handle my EDSS remaining at 4 but if I could remove the brain fog and fatigue my life would be much more pleasant. I believe revimmune has the greatest potential to give its patients a second chance. _________________ Marcia
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