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-   -   RR,SP,orPP...who, what, when.... (https://www.neurotalk.org/multiple-sclerosis/49256-rr-sp-orpp.html)

Snoopy 07-06-2008 05:33 PM

Quote:

Originally Posted by chrishadms (Post 316972)
The simple fact is if you have MS and you have lesions ad disability this is the only thing out there on the market covered by insurance that promises to heal them and restore lost ability.

I have a hard time with words like "promises, cures, restore" when speaking about MS.

At this time there is NO gaurantee Revimmune or any other drug will do any of those things. As it is we are 10 to 20 years from knowing if Revimmune does what some believe it can do.

I understand your enthusiasm and I hope your right but at this time I have a hard time getting excited.

I'm curious, Chris - how long have you been diagnosed?

tovaxin_lab_rat 07-06-2008 05:55 PM

Quote:

Originally Posted by Snoopy (Post 316991)
I have a hard time with words like "promises, cures, restore" when speaking about MS.

At this time there is NO gaurantee Revimmune or any other drug will do any of those things. As it is we are 10 to 20 years from knowing if Revimmune does what some believe it can do.

I understand your enthusiasm and I hope your right but at this time I have a hard time getting excited.

I'm curious, Chris - how long have you been diagnosed?

I believe he's been diagnosed since mid 2004.

chrishadms 07-06-2008 05:58 PM

I'm sure I have had MS since I was 8 years old. I physically started and was dx'd in June of '04.

I know and it's OK. I just wish you would go here....

http://www.gothicy.com/component/opt...d,14/Itemid,7/

read the other blogs.

If Keri gives us permission to centralize her as well we will use her posts from her there too.

Please I do ask for you to show me anything else out there with these results? If there is why is no one talking about it?

starfish 07-06-2008 07:06 PM

Chris, this is a group of some very healthy, educated skeptics, who know to look behind the statistics. I helped a biology professor do a study on circadian rhythms with slugs back in the late 70s. Basically we took the data we collected and looked for the statistical model that made our numbers look the best for what we were trying to prove.

That said, of course we hope you and Kerri, as well as the others do as well as you possibly can do with the technology we have. You are on the cutting edge of a frontier drug protocol. Whatever happens, this was your best shot to try to stop your progression. I think we all understand that.

Again, I am learning so much from this thread, and again thank you for starting it.

chrishadms 07-06-2008 08:05 PM

See you are the first person who can truly appreciate why the RRMS folk are given priority...it helps the data to look better.

I mistyped before...I was dx's in 04 but I have had it since I was 8.

starfish 07-06-2008 08:15 PM

Yes, it does. I think other folks here get that too.

There is no perfection in how any of this is done.

However, we do need to move forward, despite the variety in MS progression.

I am grateful for the doctors who struggle to get new studies approved and grateful for people like you who will go for it, so ultimately we all benefit.

It is wonderful that you have this very gung ho attitude and you are fighting, to get as much of the former you, back as soon as you can. It is a battle worth fighting, especially at your age with your progression.

I can tell you are a fighter. It is why this thread is on page 8 already and you are still with us! :) Bravo!

tovaxin_lab_rat 07-06-2008 08:21 PM

Chris

Are you saying that we aren't believing you because we are not jumping on the bandwagon and doing this therapy??

Not everyone CAN do this. Your enthusiasm is to be applauded but hey you have to respect other's choices. This is brand new and not proven yet. Give it some time. :)

I am in the Tovaxin trial and I am watching what is happening on that front. Look how quiet it's been.

Snoopy 07-06-2008 08:57 PM

Quote:

Originally Posted by Av8rgirl (Post 317168)
I am in the Tovaxin trial and I am watching what is happening on that front. Look how quiet it's been.

Chris, I have no more faith in Tovaxin (right now) than I do in Revimmune although I wish Av8rgirl and others in the trial all the best.

As I said before I am very skeptical :rolleyes:

I truly appreciate you, Av8rgiirl and others who are willing to try new treatments, to be lab rats ;)

chrishadms 07-06-2008 10:56 PM

Well I know of of two people who quit the Tovaxin trial to do this and they were getting the real thing. It was the reason why I was wondering if anyone with Tovaxin had seen lesion or black hole healing like they are with Revimmune.

I am not saying you need to hop on any band wagon folks. I just find it sooo fascinating how some say they want to get better but get rather mad when others actually do.

Kick back and wait. If your MS will let you -do it!

I wonder how many have been defined by MS and now that the definition is changing so are these people. A lady told me, "I've been doing stuff concerning MS for so long I can't imagine what I would do if MS was gone!"

Exactly!! No one likes change.

kicker 07-07-2008 06:44 AM

Chris, Just guessing, I certainly don't know. Has anyone ever suggested PR to you, you sound like a weird combination of both in a Chris-like manner. You just don't fit molds, you kinda lucky dog.


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