Buffalo study

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

Buffalo study

Postby foreignlesion » Fri Jan 22, 2010 7:25 pm

Just though I'd post the link to the study in Buffalo. I don't remember seeing it anywhere here and I thought it might help to have it's own heading.

http://www.bnac.net/?page_id=517

One thing I find odd about the selection criteria is they are not allowing MS patients with venous malformations into a research project studying venous malformations in people with MS.

I also find it disapointing that they are not making individual results available tro patients or their doctors. That doesn't bring anyone any closer to treatment.
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Postby escape_goat » Fri Jan 22, 2010 11:15 pm

I think that the release of the results of a blinded clinical trial will bring us ALL closer to treatment. I am so eager to see the results of the trial. If they come out in line with Zamboni's findings, I think that CCSVI will start getting a lot of attention from those who have been ignoring it.

People who participate in trials, of all kinds, are such heroes. They suffer risks, and possibly forgo any personal gain, so that we can all benefit from the findings.
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Postby foreignlesion » Fri Jan 22, 2010 11:23 pm

Sorry I came off so pessimistic.........it does bring everyone closer to a cure..........all research does. Truth is, I don't qualify for most clinical trials, including this one for several reasons. I have been trying to find some form of trearment of any sort, and I feel like I don't have a lot of time before I lose any more of the fraction of the man I once was. This time of the year has proven to be the hardest time for me and it always fells like I lose more than any of the progress I have made during the rest of the year.
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Postby escape_goat » Fri Jan 22, 2010 11:37 pm

I understand completely where you are coming from. The pace is maddeningly slow... But I have the feeling that this is only going to really get its legs when the trial results add credibility to the theory. I think when we start getting scientifically valid, repeatable results out of this, CCSVI going to start getting interest from all sides. People will need to look into the mechanisms, others will need to look into the treatment. Who says the best treatment's even been discovered yet? That may still be to come as well. I'm excited to see a start to this process, at least.

It's amazing what will exclude you from trials. I wanted to get in a trial for an oral therapy, but was excluded because once, over 5 years ago, I took a single dose of Tysabri. It seems unbelievable to me that such a thing would make me unfit to participate today, but I suppose the big thing is for them to try to weed out any variables, so they can't be accused of stacking the deck in any way.
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Postby Johnson » Sat Jan 23, 2010 12:12 am

OT, and all, but I wanted to express appreciation of user's names "foreignlesion", and, "escape goat". The best that I could come up with was... Johnson.
My name is not really Johnson. MSed up since 1993
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Postby whyRwehere » Sat Jan 23, 2010 1:54 am

Yah, I love foreign-lesion...too funny. Can you travel FL?
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Postby jay123 » Sat Jan 23, 2010 4:16 am

But please as a newbie, do a search before posting. There are many other threads on this.
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Postby foreignlesion » Sat Jan 23, 2010 1:53 pm

Why........yes I can travel.

Jay:

a - Not a Newbie
b - Don't have the time or the energy at this time to do a search.
c - This is not a stcky........if people don't want to discuss this topic or reply to anything that is said here, the thread will fall away.
d - Should this thread help anyone doing a search or looking for the information posted.........there is no harm
e - Newbies should be welcomed to start forum discussions, the information they post may not be of any help to you, but personally, I am in much need of healthy conversation with people who understand many of the hardships I am currently facing.
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Re: Buffalo study

Postby AlmostClever » Sat Jan 23, 2010 2:29 pm

foreignlesion wrote:
I also find it disapointing that they are not making individual results available tro patients or their doctors. That doesn't bring anyone any closer to treatment.


I found that disappointing also. Isn't that like the doctors finding out you have cancer and not telling you?
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby Lyon » Sat Jan 23, 2010 3:27 pm

.
Last edited by Lyon on Mon Nov 21, 2011 8:52 pm, edited 1 time in total.
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Postby markus77 » Sun Jan 24, 2010 9:57 am

agreed foreignlesion & Lyon......
STAY REAL MY FRIENDS

dx 1989, spms
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Funds for Buffalo Study

Postby Moom9335 » Mon Jan 25, 2010 10:58 am

I made a donation through Direct-MS for Buffalo. Got a note saying $75,000 has been donated to the study. Our money may be more powerful than our words. Keep on donating so that CCSVI will carry credibility to the doubters. :D
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Postby ozarkcanoer » Mon Jan 25, 2010 11:06 am

Moom9335,

Well said ! I have made a donation to BNAC also. I know there are a lot of people with MS who can't afford to donate because of their disability. But for everyone else, let's put our money where it will help the most, to research !!! Big Pharma isn't going to fund this research for sure.

Go to the "making CCSVI charitable contributions" sticky at the top of this CCSVI board !!!!

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Postby jay123 » Mon Jan 25, 2010 7:12 pm

foreignlesion wrote:Why........yes I can travel.

Jay:

a - Not a Newbie
b - Don't have the time or the energy at this time to do a search.
c - This is not a stcky........if people don't want to discuss this topic or reply to anything that is said here, the thread will fall away.
d - Should this thread help anyone doing a search or looking for the information posted.........there is no harm
e - Newbies should be welcomed to start forum discussions, the information they post may not be of any help to you, but personally, I am in much need of healthy conversation with people who understand many of the hardships I am currently facing.


a- your status was newbie
b- i didn't realize it took so much extra effort to do a search, sorry (and that's sarcastic)
c- agreed, but it also fills up the forum and 'hides' important posts that people might want to see
d- see c
e- newbies should be encouraged to read up and find all the info that was already posted. yes, everyone has a right to start new threads but it works much better if you find the old post and then add comments or questions to it so all information about something is in one thread as opposed to someone having to read X numbers of threads, all about the same thing, to find informaton.

And if you are so tired that you need special treatment and feel you can post any thread you want, why are you wasting so much energy slamming me for trying to get you to follow forum etiquette typing instead of just reading old posts?
Sorry, bad day for me and I didn't need the BS as a person who tries to do a lot of research to help everyone, including myself.
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Postby jay123 » Mon Jan 25, 2010 7:18 pm

Lyon wrote:
foreignlesion wrote:c - This is not a sticky........if people don't want to discuss this topic or reply to anything that is said here, the thread will fall away.
Good to see you stick up for yourself.

I can't understand why recently people are pissing and moaning about the number of threads. If unused they quickly sink out of sight and out of mind.


Lyon,
The reason is that there are so many threads now people (not just me) who regularly try to read everything are having a difficult time keeping up and are missing some important threads.
For example, I totally missed the thread where a girl was treated by Dr. Mehta in Albany, NY because it started as one topic and moved on.
Plus, it makes so much sense to try and concentrate information in a thread instead of having multiple threads on a topic where you might miss something important that someone said in one of them and not in the others.
I don't want important threads to sink out of sight due to too many threads.
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