.......

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

Postby chrishasms » Mon Jun 29, 2009 7:04 am

Amen Cheer and congrads.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Advertisement

Postby chrishasms » Mon Jun 29, 2009 7:10 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:15 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby peekaboo » Mon Jun 29, 2009 8:15 am

A few thoughts here -

Bob has ths right to say and believe what he wants. I personally do not agree w/him but we need skeptics in this world or all of us would believe in UFO's...

According to the rules of Statitics a population of 100 can provide justifiable results.
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby MaggieMae » Mon Jun 29, 2009 8:45 am

I also saw nothing wrong with Bob's post and he tries to make his point without offending anyone. The statistics are very encouraging but we need the give and take on this forum in order to be taken seriously.
User avatar
MaggieMae
Family Elder
 
Posts: 380
Joined: Wed May 23, 2007 3:00 pm
Location: Pennsylvania

Postby guitarguy » Mon Jun 29, 2009 9:12 am

peekaboo wrote:A few thoughts here -

Bob has ths right to say and believe what he wants. I personally do not agree w/him but we need skeptics in this world or all of us would believe in UFO's...

According to the rules of Statitics a population of 100 can provide justifiable results.




Ofcourse he has a right to say what he believes and a little skepticism is not bad. I don't have a problem with that and I doubt anyone else does either. I think it's the negativity. We are suffering from a chronic illness, We need to have some hope.

I came and I saw Cheerleader, sharon and mrrhodes posts here and it was all so positive it make me feel good and gave me hope again, It's a real downer when someone comes in often on threads and start bursting bubbles.

I don't think any of us believe in santa or the easter bunny. But this is exciting and I think we are all anxious to see what comes from this before shooting it down.

oh I do believe in UFO's though. :)
User avatar
guitarguy
Family Member
 
Posts: 69
Joined: Wed Feb 20, 2008 4:00 pm

Postby chrishasms » Mon Jun 29, 2009 9:58 am

123
Last edited by chrishasms on Sun Dec 06, 2009 12:16 pm, edited 1 time in total.
chrishasms
Family Elder
 
Posts: 1161
Joined: Thu Sep 14, 2006 3:00 pm

Postby Sharon » Mon Jun 29, 2009 10:17 am

guitarguy wrote:
I came and I saw Cheerleader, sharon and mrrhodes posts here and it was all so positive it make me feel good and gave me hope again, It's a real downer when someone comes in often on threads and start bursting bubbles.


We have tried to give an honest opinion of what we have gone through with our treatment at Stanford ----we have all warned that this is surgery, it is not easy -- you will experience pain -- you are not going to feel good for awhile -- and we are all walking on egg shells when we mention a symptom improvement. We are not giving out false hope if you read the posts. It has been two months since Jeff's surgery - his quality of life has changed
In my personal landscape, it all feels a bit miraculous.
cheer
IMHO this is a great way to start the week!!

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1236
Joined: Sun Nov 07, 2004 4:00 pm
Location: Colorado

Postby peekaboo » Mon Jun 29, 2009 10:48 am

My words were not fighting words I'm sorry if I sounded that way. Remember I am the 4th person to have venous intervention. I was trying to smooth the anti bob thing out and boy did that flop.

All information on this forum is genuine,honest and knowledgable, that can be backed up by science. The encouraging news, comments etc are great for us MS'rs. Just we cannot take negative statemetns personally

mm wrote:
I also saw nothing wrong with Bob's post and he tries to make his point without offending anyone. The statistics are very encouraging but we need the give and take on this forum in order to be taken seriously.
User avatar
peekaboo
Family Elder
 
Posts: 623
Joined: Sun Feb 08, 2009 4:00 pm
Location: Arizona

Postby scorpion » Mon Jun 29, 2009 11:29 am

What drew me to this site was the the knowledge, insight, and advice that many people on this site contributed to the group. This site is here to let people with MS, those with family memebers with MS, and others relieve some of their "MS burden" by sharing experiences and talking with others going through the same things. Although reality is tough I think we all need to eventually accept (man it is hard) that we have MS and there is the possibility we may one day end up in a wheel chair, need help eating, etc. By accepting this I have gained a greater appreciation for what I have now and believe it or not it has made my life fuller. I recently watched a TV show about a gentleman who had OCD that believed if he followed an exercise regimen everyday, he would live long enough for science to find ways to allow everyone to live to 100. Exercise completely dominated his day and evenings and interfered with his relationships with his family. Anyway, when the therapist challenged the gentlman's premise and proposed that there is the possibility science may not make discoveries that allow everyone to live that long it made the man extremely agitated and defensive. Could the gentleman be right? Sure! Bob in a lot of ways I see you as this therapist(congrats haha) and some of the members reactions the same as the gentlemans. I think that in order to for this forum to remain a progressive place to talk, we need the ideas AND questions even if they make people uncomforable.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby guitarguy » Mon Jun 29, 2009 11:41 am

scorpion wrote: Bob in a lot of ways I see you as this therapist(congrats haha) and some of the members reactions the same as the gentlemans. I think that in order to for this forum to remain a progressive place to talk, we need the ideas AND questions even if they make people uncomforable.


I get that kind of therapy from my neurologist and too often from myself. I think we all know what the reality is, It's not a question of denying it. It's about keeping a positive outlook, which is always recommended for everyone with all kinds of diseases not just MS. I don't think it's anybodies place to smack us back down to reality or makes us feel bad about our disease.

It's like having a constant headache and you start to feel a liitle better even though you know it's still there then having someone yell in your ear.. You still have that headache! :(
User avatar
guitarguy
Family Member
 
Posts: 69
Joined: Wed Feb 20, 2008 4:00 pm

Postby cheerleader » Mon Jun 29, 2009 11:57 am

This is going to be long, so if you're sick of me...please just skip.

You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense. :) We can disagree respectfully, without being patronizing or sarcastic.

Not that there is any possible way CCSVI could be the "cause" of MS, but it seemed opportune that I was reading your post as my wife called from the top of the Blue Water Bridge...etc.


To me, the tone of Bob's post was unnecessarily provoking and sarcastic. But that may just be my "opinion." Why is it necessary to begin the sentence with not that there is any possible way? As though I must be a moron to believe such a thing...and I was not alone in being offended by that wording.

We all try to be respectful, but no one likes being lectured to or told they are foolish, or wrong, or naive. I've been on here for 2 years and have suffered some slings and arrows, and stepped away from the boards for a cool down period. But in the end, I realized that it was more important to pursue healing and hope. So I come back. That's my "tone." I mean, c'mon, I came on here as "cheerleader"...(more like Bambi in headlights back then) but I always tried to be hopeful, and encouraging to others looking for healing...no matter what their path was.

We're not doctors or scientists here (with a few exceptions). We're patients, and those who love patients. So, of course, sometimes we will write in a more "emotional tone." The current argument over "cause" of MS is really just about semantics. Do I "know" if CCSVI is the "cause" of MS...welp, no...no one does yet. Do I "think" that CCSVI is the "cause" of MS. Yup. But that's my subjective view, based in the science we have so far. Do I get rankled if someone questions my intelligence or sincerity? Sure, I do. I'm human, and I'm fighting as hard as I can for my husband and son.

When I first began posting about the connection to the vascular system and MS...well, let's just say the response wasn't too terrific. (I was lectured by Bob that MS couldn't be related to the vascular system, it had been studied, and there was no connection.) So I posted my endothelial program on the regimens page, because I noticed that Jeff was doing well on vasodilators and that most alternative MS treatments were vasodilators. When dignan posted the Zamboni in December....my heart leapt. Because here was a doctor who had found a tangible connection. And look how far we've come in only SIX MONTHS!!!!! Today, tysabri admitted a 10th patient has PML. And yet the folks going to Stanford to deal with their CCSVI are seen as a bit crazy...I'm sorry...is the established MS protocol less crazy? We sat in Dr. Dake's office and he looked at the image of Jeff's jugs and back to us. "That is not a good situation for your brain." he said. "But, the good news, is I can fix that."

If we want to squabble over semantics, fine. But I challenge everyone reading this to FIND SOME ANSWERS! If a singing housewife in California-(who was foolish enough to pursue the vascular connection against the warnings of more learned men)- can get some doctors together, than surely ANYONE can go out there and knock on some doors, raise some money for research, read pub med, try some new supplements, attempt physical therapy, say a prayer, encourage someone....

"not that there is any possible way" I'm ever giving up,

cheer
Last edited by cheerleader on Mon Jun 29, 2009 12:56 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby Waken » Mon Jun 29, 2009 12:54 pm

Just my quick take on this discussion about CCSVI.

Zamboni's data indicates that there is something more going on than a mere coincidence when it comes to CCSVI and MS. There is a strong correlation between the two but we don't have enough information to say CCSVI is a cause or symptom. I guess it is the new chicken and egg argument in the world of MS. Which came first, CCSVI or MS. Therefore, we can't say CCSVI is the cause of MS NOR can we say that it is not the cause of CCSVI. Either statement is wrong (for now).

I am intrigued by CCSVI and will be watching and reading every tidbit of information about it that I can obtain. Now if only this whole process would move faster. Yesterday would not be soon enough for me.
User avatar
Waken
Getting to Know You...
 
Posts: 11
Joined: Mon Dec 01, 2008 4:00 pm

Postby Lyon » Mon Jun 29, 2009 1:04 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:30 pm, edited 1 time in total.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby cheerleader » Mon Jun 29, 2009 1:35 pm

Lyon wrote:
cheerleader wrote:You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense. Smile We can disagree respectfully, without being patronizing or sarcastic.
You're just kind of throwing generalizations out there so I'm not sure if I should respond to this or not. If this is aimed at me, PLEASE go through my responses again and point out the disrespectful, patronizing and/or sarcastic parts.

cheerleader wrote:If we want to squabble over semantics, fine.
I suppose I should apologize. I'm being too much of a stickler and I shouldn't take semantics and accuracy so seriously.


Examples of patronizing and/or sarcastic quotes:

1. "Not that there is any possible way CCSVI can be the cause of MS..."
2. "I shouldn't take semantics and accuracy so seriously"
3. "I wasn't the only person who understands objective science..."
4. "field of dreams science...."
It's all about tone.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5031
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby guitarguy » Mon Jun 29, 2009 2:07 pm

Lyon wrote:First, whether I'm taking some heat or not I find it wonderful that at least there is NOW some two way dialog regarding CCSVI.

NHE, with 5000 TIMS members, most of them lurkers, I knew I wasn't the only person who understands objective science but I can't tell you how heartening it is to hear from another, especially in the midst of this grass fire.

Chris, although your comments weren't intended to be taken as a complement, I can't take them any other way. Obviously you and others have taken me as an "opponent" of Revimmune and CCSVI when in reality I'm a proponent of both who insists on comments based on more than just "field of dreams" science.

The compliment to me lies in the fact that in objective science, done right, the proponent can be mistaken as an opponent.

cheerleader wrote:You know....after pondering this, I just think it comes down to "tone." -Of course, I'm a musician, so that makes sense. Smile We can disagree respectfully, without being patronizing or sarcastic.
You're just kind of throwing generalizations out there so I'm not sure if I should respond to this or not. If this is aimed at me, PLEASE go through my responses again and point out the disrespectful, patronizing and/or sarcastic parts.

cheerleader wrote:If we want to squabble over semantics, fine.
I suppose I should apologize. I'm being too much of a stickler and I shouldn't take semantics and accuracy so seriously.


Intentional or not you do this. About a year ago you make a comment in the revimmune forum that upset me so much I had my husband read it. He just blew it off and said you worded it poorly and that you didn't mean how it came off. So I stopped reading that forum. You said something about the 'hopelessness of our disease' Geeez! I got news for you, there is hope for us.
(I can do a search and find the post)

Now I am back a year later and the same thing all over again, now in the CCSVI forum.

But right now I am very happy learning about CCSVI, the people who post here are awesome, they are not sugar coating anything. They tell it like it is. I have learned so much and I do have hope, I can't help but resent it when someone tries to take that away. Even if this doesn't pan out, for the time being it feels good to be postive about something when it comes to MS, is that so wrong?
User avatar
guitarguy
Family Member
 
Posts: 69
Joined: Wed Feb 20, 2008 4:00 pm

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service