Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
I have been against jumping on the liberation band wagon. However, my grandfather read an article in Maclean's magazine http://www2.macleans.ca/tag/multiple-sclerosis/ and has decided that if I want it, he will take me anywhere in the world to get it done.
I have always figured that this wasn't the cure and maybe it helps only some people but not all people with MS. The scans aren't available in my area to even find out if I have narrowed veins.
My mom told me I should just research it and if it sounds good, pick a place in the world you want to visit so we'll have the treatment done there.
Now what should I be reading if I want to decide whether I want to go down the route or not?
Does anyone have advice for or against it?
Keep in mind that I have only been diagnosed with MS for less than a year, and I was diagnosed within the same week I experienced my first symptoms.
I have always figured that this wasn't the cure and maybe it helps only some people but not all people with MS. The scans aren't available in my area to even find out if I have narrowed veins.
My mom told me I should just research it and if it sounds good, pick a place in the world you want to visit so we'll have the treatment done there.
Now what should I be reading if I want to decide whether I want to go down the route or not?
Does anyone have advice for or against it?
Keep in mind that I have only been diagnosed with MS for less than a year, and I was diagnosed within the same week I experienced my first symptoms.
Then I believe the ThisIsMS forum yhas the most about it, you might want to do some snooping there of the best places to do it.
http://www.thisisms.com/ftopict-9254.html
Crohns & MS with a pretty severe MS onset at a young age may classify for compassionate use.
http://www.dailystrength.org/c/Multiple_Sclerosis_MS/forum/9506450-live-ccsvi-presentation-april-14
http://www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf
I feel that I should apply for it since it is a two year waiting list, and if something comes out between now and then I have the option of stopping it.
I will definitely be looking through those links for more insight.
Thank you again
I actually think this will be more beneficial to your grand father than to you. Which ever way it works out for you---( and it would be my hope it would be beneficial to you)
But either way it must tear your grandfather up inside to watch what is happening to you and be powerless to stop it. At least if he provides the possibility of stopping it-HE will have more peace inside.
For you I can imagine your dilemma, IS THIS THE RIGHT POSSIBILITY? I hate MS. I think I hate MS & Crohns even worse, just from reading of peoples experience with both. I'm not a big fan of MS and Diabetes also. :(
I think I have a poor view of auto immune diseases in general.
I honestly think there is more research to be done before this procedure is seen as the cure the founder calls it to be... When I was first dx, nothing was available and Betaseron was distributed AFTER your number was called in a "lottery"... Was on that over 8 years with horrible sides the entire time, but it keep me flare free...
Now on Copaxone with very few sides, and it is keeping MY MS at bay... Of course, we're all different, but I don't wish to be a lab rat... Tread carefully and do much much research! xoxoxo Cj (Cindyjo)
Personally, I would not hesitate for a minute.
Best of luck :-)
Two paragraphs jumped out atr me, actually a few..
In an article released in March 2010 in Annals of Neurology, Dr. Oman Khan and colleagues reviewed and examined the available information on CCSVI. In the review, Dr. Khan highlights a number of inconsistencies in the initial CCSVI research. Specifically, Dr. Khan looks at the preliminary trails of Dr. Zamboni and his research team.
&
Another potentially concerning discovery that was discussed at the meeting comes directly from Dr. Zambonis team. Through a number of complicated studies, the researchers found that there is less blood volume in the brains of MS patients versus age and sex-matched controls. Considering the fact that the hypothesis would predict more blooddue to backupthis finding is puzzling and brings into question the very hypothesis of CCSVI.
&
When one compares the percentage of MS study participants in the Zamboni trial to that of the recent University at Buffalo study, there are some confusing results that appear to underscore a number of inconsistencies. As opposed to Dr. Zambonis study, which found evidence of CCSVI in 100% of study participants with MS, in the Buffalo study only 62.4% of MS patients had the condition. That was compared with 25.9% of healthy controls.
&
The fact that evidence of CCSVI was found in both MS patients and controls contributes to the ambiguity of the role of CCSVI in MS.
&
Additionally, iron deposits were discovered in similar areas in the MS and control groups, and did not specifically correlate to the brain lesions seen in MS patients.
http://app.e2ma.net/campaign/31451.4cfdda29b65a5a72799cd4d782d0c971#Breaking
I figure I will get the scans done to see if I even have narrowed veins and then I will consider seeking treatment.
I do not feel like I have MS right now. I haven't felt the fatigue, or had any real symptoms in almost two months. and I don't feel as though this will help. I felt good when the doctors were offering me betaseron, but I just don't have that "good" feeling when I think about this.
There is a chance that there will be a cure in my life time. This probably isn't it. It's all so confusing