check out this joker...

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Motiak » Fri Jul 09, 2010 8:19 am

I think stem cells will be important in repairing damage. My understanding is there are two stem cell approaches, one where you destroy the immune system and rebuild it with stem cells and one where you simply use stem cells to attempt to repair neurological damage. I feel like the second method and CCSVI could work hand in hand just nicely.
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stem cell treatment

Postby dania » Fri Jul 09, 2010 11:18 am

In October 2009 I had stem cell treatment. It did nothing postive for me and I am much worse now. I have remained in contact with the 3 other I met while there and all of them are much worse today. I have only met 2 people who said they improved with stem cells and they had RRMS.
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Postby costumenastional » Sun Jul 11, 2010 11:09 pm

Thanks Dania. You see, the problem is when patients use the word "CURE" and by that, drawing attention that is misguided to say the least.
Using our bodies as subjects for experiments is one thing. Saying that we are cured is another.
I am sorry it didn't work out for you. I really hope that opening your veins will help a bit.
Keep us in the loop please.
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Postby L » Mon Jul 12, 2010 11:14 am

I'm glad for him that something appears to work.

Maybe he is unwilling to accept CCSVI because he has stored up risk for the future with his treatment and doesn't want to realise that he, possibly, chose the wrong course of action.
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Postby nicknewf » Mon Jul 12, 2010 11:21 am

Fix the hoses and change the oil. (As if we need more bad metaphors.)
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Postby Loobie » Tue Jul 13, 2010 9:18 am

I also think it's just part of the dynamic of having MS. Certain things seem to work for certain people. That's why the cure word is certainly the "C" word. it all comes down to no one should ever call anything an actual cure unless it works on ALL of us.
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Re: check out this joker...

Postby mccandless58 » Mon Jan 02, 2012 2:54 pm

This "joke" has been going on a long time now. Maybe there's actually something to it.

http://themscure.blogspot.com/2011/02/2 ... tatus.html
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Re: check out this joker...

Postby euphoniaa » Mon Jan 02, 2012 3:33 pm

mccandless58 wrote:This "joke" has been going on a long time now. Maybe there's actually something to it.

http://themscure.blogspot.com/2011/02/2 ... tatus.html

FYI - He's a regular poster on the Stem Cell Forum here at TIMS if anyone would like to talk to him.

******************
I will now re-edit this post because mccandless accused me below of accusing georgegoss of being a liar. I only said that "it sounds like he's had more success with HSCT than many have had with CCSVI treatment," and it does.
Last edited by euphoniaa on Mon Jan 02, 2012 6:30 pm, edited 1 time in total.
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: check out this joker...

Postby EJC » Mon Jan 02, 2012 3:44 pm

That Colin Rose guy is some piece of work isn't he.
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Re: check out this joker...

Postby patticake66 » Mon Jan 02, 2012 5:08 pm

I don't get it....what does Rose have to do with the stem cells??? Please clarify...
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Re: check out this joker...

Postby mccandless58 » Mon Jan 02, 2012 6:06 pm

Removed by poster.
Last edited by mccandless58 on Mon Jan 02, 2012 9:04 pm, edited 2 times in total.
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Re: check out this joker...

Postby euphoniaa » Mon Jan 02, 2012 6:23 pm

mccandless58 wrote:
euphoniaa wrote: Edited to add that it sounds like he's had more success with HSCT than many have had with CCSVI treatment.


That's a pretty strong statement. Saying that someone's statements are munipulated or skewed is pretty close to saying that he's a liar. Do you know for a fact that he is "editing" his comments so as to misrepresent his actual resultant success to something that is untrue? Do you know this guy personally? Or have access to his medical record as verification?

Doesn't seem right to say something like this if it's only because one does not agree with him.

Holy crap! That's not what I said at all! I posted a single sentence and then I edited my post to clarify my statement. I will now re-edit it.

I apologize for the confusion...I have no idea how you misconstrued my statement. I was basically trying to take up for the HSCT blogger/TIMS member who was being ridiculed in this thread!!!!!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Re: check out this joker...

Postby mccandless58 » Mon Jan 02, 2012 8:54 pm

euphoniaa wrote:Holy crap! That's not what I said at all! I posted a single sentence and then I edited my post to clarify my statement. I will now re-edit it.

I apologize for the confusion...I have no idea how you misconstrued my statement. I was basically trying to take up for the HSCT blogger/TIMS member who was being ridiculed in this thread!!!!!


No need for you to apologize. My sincere apologies for my own misunderstanding. That's the problem with reading written words. . . . the human mind can sometimes fill in too much, as happened with me.

I revised my original comments and hope you will accept my apology. You have made good and relevant points. I will try to be better observant in the future in an attempt to avoid a repeat.

Hope the New Year is getting off to a good start for everyone!
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Re: check out this joker...

Postby THEGREEKFROMTHED » Tue Jan 03, 2012 6:43 pm

Costume my brotherand you know im on your side. But i must tell you i met with dr burt at northwestern univ as well as talked to several of his subject that he has "cured" thru his hsct protocol. Only god knows if it will last or what the chemo will do but for now these people are living normal healthy lives. I was rejected due to the agressive progressive nature of whatever the hell is eating my spine as his patients are all rrms with enhancing lesions on mri with gd. As far as georgegoss he is secondary progressive and went to germany. Loobie is right when they can figure out something that works for all of is then boast it. But until then just keep trying.
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Re: check out this joker...

Postby aries78 » Wed Jan 04, 2012 1:12 am

Hello,

I am checking this forum once in a while and I just want to talk about my progress:

I was having relapses every 3-4 months until 3 years ago. End up walking with a cruch and using a wheelchair for longer trips.

2-3 years ago, I've decided to try the stemcell treatment(involving the chemo). That was a tough treatment but today after 3 years, I can say it worked for me. No, it didn't cure me but I didn't have any single relapse since.

Of course, I wanted to fix my damages, so when ccsvi came, I've tried too. The first time, I could not believe, in a very short time, I improved so much. But symptoms came back, so I went 3 more times! Until, I finally gave up.

So, whithout going into too much details, stem cells worked for me to stop relapses and today(after 2-3 years), I feel that I am improving but it takes time and lots of motivation(exercise, physical therapy, acupunture which I think is really helping me to grow back the myelin).

I like the concept of ccsvi but it didn't do much for me after 4 times(exept at the beginning). But stemcell with the chemo really improved my life, and I am not worry about guetting anymore relapse today(but it didn't cure me).

At the end, its anyone choice.

Roland
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