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Joined: May 04, 2006 Posts: 3371 Location: Mid-Michigan
Posted: Fri Sep 05, 2008 3:50 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.
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.
Bob _________________ Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.
Joined: Sep 23, 2007 Posts: 160 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. _________________ DX'd 08/2006, RRMS, currently in the Tovaxin extension study group.
Joined: Jul 28, 2005 Posts: 1268 Location: Sydney, Australia
Posted: Sat Sep 06, 2008 5:03 am Post subject:
A little off topic ...
Kyle wrote:
I had this for years and been in a chair and now have no symptoms.
From my understanding, being in a chair is at least a 6, and no symptoms is a zero. Are you really saying you went from 6 to 0? how long did that take?
...also, I meant to add in my last post that whilst thinking about patient number 3, the twenty seven year old man who went from EDSS 5 to 1 at 12 months and 3 at two years, we shouldn't forget patient number 4, a 46 year old woman who had had the diseases for 15 years and went from EDSS 5 to 0 in twelve months and was staying at zero at two years...
...also, I meant to add in my last post that whilst thinking about patient number 3, the twenty seven year old man who went from EDSS 5 to 1 at 12 months and 3 at two years, we shouldn't forget patient number 4, a 46 year old woman who had had the diseases for 15 years and went from EDSS 5 to 0 in twelve months and was staying at zero at two years...
I went to from a 6.5 to a 0 2 times in my hx with MS. I have had 4 attacks, 2 leaving me in a chair and one time I was blind for a year as well. Both times it took me a full year to recover but today I am at EDSS 0 and feel great.
Point being, yes it can happen to anyone. First time I did go on an experimental treatment, I cant say for sure if it worked or not. To this day it's still controversial and not accepted, 2nd time, well maybe I just got lucky.
I have considered revimmune, but I think there are some new therapies using stem cells that look more promsing. Just have to wait and see. I understand when people are desperate to help themselves, I have been there many times. And I hope revimmune pans out but based on the original 9 patients, I cant say THIS is the therapy to have.
I just think a lot of hype has been created here on this site. Because it's experimental and many neuro's wont support it AND it's offered at Johns Hopkins I think people saw this as a secret cure/treatment therefore making it better or special.
I just think a lot of hype has been created here on this site. Because it's experimental and many neuro's wont support it AND it's offered at Johns Hopkins I think people saw this as a secret cure/treatment therefore making it better or special.
Speculation! After speculation! After speculation!
KYLE,
Do it or don't do it and drop it. Why you here anyway if your EDSS is a zero.
Do it or don't do it and stop throwing feces at every opportunity.
I was Patient number 25 to receive HiCy. I am 2 months out from treatment and feel great. No fatigue, no brain fog and gait is improving.
KYLE,
I am so tired of your negative attitude. I am starting to believe your working for some biased drug company.
...also, I meant to add in my last post that whilst thinking about patient number 3, the twenty seven year old man who went from EDSS 5 to 1 at 12 months and 3 at two years, we shouldn't forget patient number 4, a 46 year old woman who had had the diseases for 15 years and went from EDSS 5 to 0 in twelve months and was staying at zero at two years...
I went to from a 6.5 to a 0 2 times in my hx with MS. I have had 4 attacks, 2 leaving me in a chair and one time I was blind for a year as well. Both times it took me a full year to recover but today I am at EDSS 0 and feel great.
Point being, yes it can happen to anyone. First time I did go on an experimental treatment, I cant say for sure if it worked or not. To this day it's still controversial and not accepted, 2nd time, well maybe I just got lucky.
I have considered revimmune, but I think there are some new therapies using stem cells that look more promsing. Just have to wait and see. I understand when people are desperate to help themselves, I have been there many times. And I hope revimmune pans out but based on the original 9 patients, I cant say THIS is the therapy to have.
I just think a lot of hype has been created here on this site. Because it's experimental and many neuro's wont support it AND it's offered at Johns Hopkins I think people saw this as a secret cure/treatment therefore making it better or special.
Maybe you should just not bother pursuing the treatment since you are now free of MS and perhaps avoid posting negative comments here. I understand now that you don't rate this treatment, and that you see other treatments as better options (for someone with no disability?) and just repeating the sentiment isn't getting us anywhere.
I just think a lot of hype has been created here on this site. Because it's experimental and many neuro's wont support it AND it's offered at Johns Hopkins I think people saw this as a secret cure/treatment therefore making it better or special.
Speculation! After speculation! After speculation!
KYLE,
Do it or don't do it and drop it. Why you here anyway if your EDSS is a zero.
Do it or don't do it and stop throwing feces at every opportunity.
I was Patient number 25 to receive HiCy. I am 2 months out from treatment and feel great. No fatigue, no brain fog and gait is improving.
KYLE,
I am so tired of your negative attitude. I am starting to believe your working for some biased drug company.
KYLE,
Like my MS, GO AWAY!!!
To harsh for some of you, I apologize.
You were the one threatening to sue the hotel you were at. You seem to have some general attitutude/anger issues.
Why am I here because my EDSS is a 0. I doubt it wil stay that way after 4 attacks, 2 being severe, my recovery from here on out might not be as has in the past. I like to keep my options open and not have to worry about any more attacks.
Don't like what I have to say then dont read it and move on. this is an open forum.
You were the one threatening to sue the hotel you were at. You seem to have some general attitutude/anger issues.
Why am I here because my EDSS is a 0. I doubt it wil stay that way after 4 attacks, 2 being severe, my recovery from here on out might not be as has in the past. I like to keep my options open and not have to worry about any more attacks.
Don't like what I have to say then dont read it and move on. this is an open forum.
What does me sueing an apartment complex have to do with the HiCy treatment and why are you still questioning this treatment. You have already made up your mind not to do the HiCy treatment, so why are you here Kyle? Just to bitch and moan? Maybe get the last word in? Tell us Kyle, why are you here??? tell us all. We are listening.
I have MS as well so I have the right to question your motives Kyle.
You're a troll Kyle and I think its interesting the other lying troll 777 disappeared just as you arrived.
People don't take this decision lightly and you insult them by suggesting they are being duped by JOHNS HOPKINS THE WORLD RENOWNED CENTER, it is a difficult decision to take, idiots like yourself who troll with no intelligence or fact based data behind their ludicrous claims and positions make the decision even harder.
In short Kyle, you pathetic little turd, f**k off.
I will now ignore you and go back to discussing things rationally with the vast majority of interesting and intelligent people on this site.
No reason you should ruin this community for the majority.
You're a troll Kyle and I think its interesting the other lying troll 777 disappeared just as you arrived.
Just do one you little prick.
You word smith you!! You are REALLY iNteliGitcal.
Later you can teach me how to conjugate sentences as well as you.
I feel humbled
What did I lie about? And I am no troll I asure you. You don't even have MS. But you're opinion means as much as my asshole we all have them. Feel free to continue to babble and call people names. It suits you well.
Interesting if you look through Kyle's profile and look at 'all posts by Kyle' every single post has been in the Revimmune forum.
Odd that for someone who isn't actively considering Revimmune and champions Tysabri and other treatments ahead of it.
One would have thought at least a passing interest would have lead to at least one comment on the Tovaxin or Tysabri forums.
oh answer your question. I come from neuro talk. They don't have a thread on revimmune there or want to discuss it. They did refer me over here.. So here I am.
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