This Is MS Multiple Sclerosis Knowledge & Support Community

Posted: **Fri Sep 05, 2008 5:21 pm**

Thanks for the figures Kyle, I see now what you mean.

I've never used the word cure.

But she's stopped getting worse for now, that'll do for me.

Next time you spout off, make sure its fact based rather than spite based.

I hope all goes well for you old egg, I'll revert back if Mel reactivates, I'm sure it'd cause you untold delight.

Posted: **Fri Sep 05, 2008 7:12 pm**

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.

Posted: **Sat Sep 06, 2008 3:03 am**

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?

Posted: **Sat Sep 06, 2008 4:15 am**

...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...

Posted: **Sat Sep 06, 2008 7:02 am**

Kyle wrote: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.

Posted: **Sat Sep 06, 2008 10:07 am**

Kyle wrote:
L wrote:...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.

Posted: **Sat Sep 06, 2008 10:34 am**

Kyle wrote: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.

WHY ARE YOU HERE ON THIS HiCy FORUM??

Posted: **Sat Sep 06, 2008 10:34 am**

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.

Posted: **Sat Sep 06, 2008 10:42 am**

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.

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