This Is MS Multiple Sclerosis Community: Knowledge & Support

But healthy volunteers have had MRI scans done so they can research what they find and that's when they have seen lesions.



I believe you are wrong on that point. Lesions are seen on MRI scans in healthy people. A number of years ago I read information on that and was also told the same info by a person who does MS research. And they also discovered that lesions do come and go on their own and they are not sure just why.



Other than many MS patients who have CCSVI have several levels of symptoms!

There are MS patients who don't have visible lesions but have symptoms. (My wife was one of them) Of course there are people who have CCSVI and are healthy. There are people who have lesions and appear healthy even though they have been diagnosed with MS. And there are MS patients who do not have any change in their health after they receive one of the approved drugs.

It's impossible to try and state what does or doesn't affect MS. Without a known cause it's all theory and speculation. What some researchers say may be the answer other researchers say is all wrong and vice versa.



But what can be said is that until a lot more research is done with CCSVI, one can't make any kind of definitive statement one way or the other.

I kind of know what you're talking about Harry but I don't think you have it absolutely right. In the early days MRI was hideously expensive and it's still expensive enough that they don't do MRI's for the heck of it. I would find it interesting to know who and when anyone did a sizable study using MRI on "normals" because I've always thought that a good idea and I've never seen evidence of anyone doing it.

What has happened is that over the years people not diagnosed with MS in life were found to have characteristic lesions upon autopsy and when you consider how few autopsies are done per capita there might be a sizable amount of people who die without ever having been officially diagnosed with MS.

SOME lesions come and go on their own. That is true of people with MS.

Of course there are! By the way, has someone proven that there is such a thing as a cerebrospinal venous insufficiency that the rest of the world isn't aware of yet??

From what I was told, they did these MRI's on healthy university students because they wanted to compare them to MRI's from people who had diseases such as MS. I will have to contact someone who perhaps may be able to point me to the study. It kind of makes sense to do that, especially in the early days of the MRI.



I'm not sure one could be diagnosed with MS from an autopsy due to lesions. Never heard of that before but I guess anything is possible.



And of others who don't have MS.




You just never know

This is your usual way of saving face when we both know you're you're wrong so in this same place at the same time a week from now I'll ask you for the link to that study Harry

sorry i don't follow the FB sites very often. i did not know that.

Nothing to be sorry about, I didn't know it either until I noticed it when looking for something else.

It appears you are saying that I am deliberately misleading the readers here, Bob. I do take exception to that but as usual, this is how you reply quite often, not only to me but to others that you disagree with on this board. You seem to think that I make these stories up but nothing can be further from the truth. I have already e-mailed the person who told me about this a number of years ago and asked if I could be sent the appropriate information.

I've been around long enough and read enough of your similar comments in the past to assign the level of importance that your post deserves. You can figure that out in your spare time.

Coming from someone I consider a personal friend, that hurts my feelings. I wasn't calling you a liar, I was only saying that when you're wrong you have a habit of saying that you'll get back to me with the information later and I never hear of it again and I'm sorry if this time was going to be different.

I personally would like nothing more than for you to supply the supporting evidence. As I mentioned, I've always thought it a good idea to MRI healthy controls but I've actually done searches and could never come up with anything.

As a wise man said not long ago....

fact check:
1. I do not call CCSVI the cause of MS on the Facebook page. That is part of the title of Marie Rhodes' book (titled by her publisher) called CCSVI as the Cause of MS: The Science Behind the Controversial Theory. Marie and I co-administer the CCSVI in Multiple Sclerosis Facebook page.
And the Italian CCSVI FB page has 10,000 more members than ours. We're not #1.

There were over 300 physicians, researchers, imaging professionals, neurologists, IRs and patients in Orlando last week. I wasn't there, we went to our son's All State concert. The science does not need me. That's high praise from Bob, but it's simply not true. I'm not any driving force. It's the doctors and researchers from around the globe.
CCSVI exists---as stated by the researchers in Florida. See the abstracts presented:
http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf

2. Harry's right.

http://jnnp.bmj.com/content/71/suppl_2/ii3.full

White matter lesions are also found in healthy elderly controls:
http://wixtedlab.ucsd.edu/publications/ ... cook02.pdf
In this study, the healthy control group for a migraine study showed hyperintensities:
http://www.ncbi.nlm.nih.gov/pubmed/17116221

So, now that this wonderful discussion has, once again, denegrated into Bob hurling accusations (that have nothing to do with his original post)--can it pleased be moved to the CCSVI forum, where other such posts belong?
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

I know the title of Marie's book. The question is, why is the Facebook page's title (copied and pasted from Facebook)

Sadly things aren't as simple as you proclaiming them so. Harry is not right. Harry is misguided. Harry read the above quote and evidently assumed that I was inferring that everyone with a lesion at autopsy had MS. Need I point out the word "might" and its definition?



Thanks for the substantial use of the word "healthy" for subliminal purposes but need I point out that a study of elderly people isn't representative of a normal population nor are those afflicted with migraines. The difference from "normal" is the very reason for those studies. Seriously, if everyone had lesions what would be the purpose of spending all that time and money on studies showing that elderly people and people with migraines have lesions?

Take a deep breath. REALLY, it's not THAT important to prove me wrong.



I recommend that everyone read through this entire thread to see that things were fine until cheerleader got here and became a disruptive influence.

This is the second time that you've pleaded to have the moderators cast this conversation into that skeptic septic tank thread in the ccsvi forum. WHY IS IT ALWAYS SO IMPORTANT TO YOU THAT EVERYONE ONLY GET TO SEE WHAT YOU WANT THEM TO SEE?

It's a "cause" page. That doesn't mean I think CCSVI is causative, Bob. It's a Facebook page category. The name of the page is CCSVI in Multiple Sclerosis, and our group community's cause is learning more about CCSVI.
https://www.facebook.com/note.php?note_id=43952236636


4% of normal, healthy, living people have white matter lesions that look like MS on MRI

http://jnnp.bmj.com/content/71/suppl_2/ii3.full

I could care less about being right or wrong. I'm just sick of you bullying me and Harry and a host of others online.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Bully you? Remember this is the general forum and that you recently made it clear that anyone with objective thoughts are more than welcome to stay away from the ccsvi forum. I guess the people reading all this need to decide for themselves how much bullying has gone on and if your "bringing it" here to the general forum constitutes bullying on my part. Seems to me that you're the one who is chasing people down who don't tow the line that you want them to.

Bob,

I'm really not sure how you can possibly equate saying that I will get back to on something to me being wrong!!! Good grief, in the past I have made every to get back to you and anyone else when they have asked me to provide them with proof of my comments. I suppose over the years here I have missed doing this a couple of times but it certainly wasn't intentional on certainly not because I was wrong. I do make statements and opinions that I have heard over the years and I never make up information to try and disguise the truth. If you wanted examples of the information I spoke about, why couldn't you just have asked for the info without trying to equate it to me being wrong and saying this is what I often did to try and cover up something?

I'm glad your intent was not to call me a liar but that is honestly how I felt and I had similar feelings from your perceived inference.



Here are a few links to MRI's done on relatively healthy subjects. My contact could not find the specific MRI study on univesity students that I had read about several year ago.

http://jama.ama-assn.org/content/282/1/36.full.pdf
http://www.nmr.mgh.harvard.edu/~bradd/d ... p_2001.pdf
http://imaging.jhu.edu/volunteer-for-a- ... volunteers
http://www.sickkids.ca/Research/mskids/ ... teers.html
http://stroke.ahajournals.org/content/35/9/2171.full



Good ole Bertrand Russell....this quote was taken from the Pathogenesis of MS by Dr. P.O. Behan. He was referring to the hypothesis held by most MS neuros that MS was an auto-immune disease. Quite appropriate but that topic can be saved for another day.

So Bob, now that we have expressed our feelings over each others comments, I believe it's time to move on. And I would hope that in the future, if you want me to provide info on what I may say, please ask for it without adding the extra words that could be misinterpreted. Thanks.

Harry

See, I was right when I said you were a wise man.

Still, if you find the particular links you were talking regarding a good sized MRI study of normals I'd like to see them because that has been a long time desire of mine. After all, although it would be an expensive study, how can the differences between an ill person and a healthy one be stated with confidence if researchers don't know with certainty the perimeters of "healthy"?

In the same "vein" it's obvious in this ccsvi situation that researchers can't convincingly state what the perimeters of a healthy venous system are because no one has ever found reason to study healthy people and that is showing to be to our detriment.