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#81 | ||
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Junior Member
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I will explain it like I told Dr. Kerr.
If someone found an actual working treatment to the common cold, wasn't fun but got you better and maybe made it so you didn't get sick again, wouldn't you tell everyone too? This fixes MS. I know what I just said really upsets some folks because they need the next 2 years and the FDA to tell them something works. This works. Wait till it's the norm but I just hope no more disability sets in by then. I don't make a dime off this. I just like watching people who were worse off than me get better! |
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#82 | |||
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Elder
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Quote:
Chris....saying stuff like that will make you unpopular. I like you and have followed you at thisisms and now here. Don't spoil it by making condescending remarks like that. We are a smart bunch of people here and can read and take in the data and make decisions on how we treat our MS. You can't push it on us. You can put the data out there, inform us about this new treatment, and let it go at that. But when you start putting people down for not following your advice, that's just not a good idea. And just b/c two people have quit Tovaxin doesn't make it a bad drug. It just didn't work for them. How many people have quit Tysabri? Betaseron? Any other medications? I quit Beta and I quit Copaxone. Does that make those drugs bad? No, they just didn't work for ME. As I already stated, Chris, your enthusiasm is to be applauded. But don't ruin it by being pushy and putting down other people's choices. This is just too new to be accepted by everyone right now. And you also have to take into consideration that not everyone CAN get in for treatment, even if they wanted to! Just tell us how you are doing and let those who are interested ask questions and don't be so negative to those who are skeptical. It's not productive. ![]()
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Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | Aarcyn (07-07-2008) |
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#83 | |||
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In Remembrance
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I am really tired of your condescending posts, Chris. HiCy/Rev is not a proven cure for MS and your touting it as such, is not fair to us poor dumb slobs, who know no better..
![]() I am happy for your improvements and I hope they continue. Please report back here, when you have more good news and thank you for being a pioneer in this fight against MS. I am looking forward to RedPenguin's updates and yours, as well. ![]() ![]() Quote:
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~Love, Sally . "The best way out is always through". Robert Frost ~If The World Didn't Suck, We Would All Fall Off~ |
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#84 | ||
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Junior Member
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Sorry folks I am not neuro that is going to sugar coat things and tell you there is nothing out there when there is.
Who is condescending.. I ca give you the info of two people who quit Tovaxi to do this. Oe of them is known as Chris S, (PVNS on thisisms and one of the starters of the Tovaxin forum) is in JH right now getting it and another gentleman by the name of Lew or Loobie from the same form who is quitting to do this. Sorry folks if you don't want me to tell you stuff that isn't true to ma ke you feel better it's not going to be me. I put up with that for 4 years from 3 different doctors and assured myself and others I would't do that ever. If you don't like me stating the truth do this.....When you see I posted something don't read it! Problem solved...I am only talking to those who don't need sugar coating. If you don't like what I say don 't read it. |
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#85 | |||
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Member
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As to your original post, it is true that the MS labels were devised by doctors wanting to place 'like afflicted' subjects into groups for research study. With the possible (or probable, depending on who you listen to) exception of PPMS, the labels don't indicate different diseases. Nor do they represent different sequential stages of MS. They simply represent the course MS happens to be taking in a particular individual at a given time.
Your movement from one 'label' to the next is not inevitable, nor is it even remotely predictable. As more and more people are diagnosed, the MS labels are falling more and more into question, which is fine with the people who came up with them the first place. My favorite quote: labels are for FOOD. Not people. Regarding this... ...I don't personally find it condescending, I find it indicative of the fact you're not being particularly objective (not as objective as you seem to want to appear, anyway). Like many here, I wish you good health. Also like many here, I'm reasonably - intelligently - critical of anything being touted as a cure. What you've discovered is what works for you, what works for some other people, and what you really need to believe in right now. Is it worth exploring? Testing? Questioning? Absolutely! Let the process continue - but right now it's a far cry from a cure. |
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"Thanks for this!" says: | Aarcyn (07-07-2008) |
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#86 | |||
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Grand Magnate
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Chris,
The good news, your enthusism gave me a push to be as pro-active as I can be, but I know limits and realities. The bad news - you come on too strong. Some can't tolerate the procedure; I know myself and several others, even if we lived in JH ,would not be accepted for treatment. I'm not stupid or bull-headed, I just can't have it, no one will let me have it. No matter who thinks differently, I can't. Like an accident on the highway you can't look away from, I see a new post on this thread and go in again. My bad. OK, we get it, HyCy good for you, not for me, now matter how much I want life to be different. I do believe ther I do believe there are different types of MS. Lesion inflamation ( not one of my MRIs shows any enhanced lesions), lesion load and vicinity, course of disease and stuff. My beliefs are as valid as yours. Dr Kerr would take one look at my MRI and not accept me. Hope is great, but not when it's not for you.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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"Thanks for this!" says: | Aarcyn (07-07-2008) |
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#87 | |||
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Grand Magnate
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Of course I'm glad it worked positively for you, but I'd be lying if I said I wasn't a little sad for me.
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Kicker PPMS, DXed 2002 Queen of Maryland Wise Elder no matter what my count is. |
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"Thanks for this!" says: | Aarcyn (07-07-2008) |
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#88 | |||
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Elder
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Quote:
We don't need anything sugar coated, Chris. That's not what we are asking for. But we don't need this crammed down our throats either. You're not getting it. As Kicker said, some people cannot tolerate the procedure. Are those of us who are "choosing" to be pioneers for other clinical trials ignorant? Should everyone be lining up at the door to get this treatment? Is that what you are saying?
__________________
Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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"Thanks for this!" says: | SallyC (07-07-2008) |
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#89 | |||
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Member
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Quote:
__________________
On Tysabri and love it. . |
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"Thanks for this!" says: |
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#90 | |||
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Elder
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Back to Chris' post about Lew quitting the Tovaxin trial. I asked Lew. He has NOT quit Tovaxin. He is still in the trial and wants to stay in and see if it is going to work.
He has, however, talked to the people at JH and asked about HiCY. Two people have not quit Tovaxin to go to HiCY. Ask and verify.
__________________
Cheryl Dx: MS 2001 CRPS 2009 “When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” - Henry Ford |
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