Another con-CCSVI

[elliberato]

Chris you seem to be all over the place just being negative. Sorry you have not had good results but many have. I have noticed that some people with negative results were on DMDs before treatment. These drugs take a long time to get out of system no matter what neuros say. Were you or are you still on any. You were just recently treated also and it can take time depending on how long you have had MS. This treatment even if there are a few blips is still a much better option than the expensive, sometimes even dangerous, not properly tested, fasttracked drugs.

Liva

This is a perfect example of why the bias in this forum has turned it into a clicky little party. Chris i had the procedure in March by a very competent Dr and yet I have continued to go downhill, and fast. People dont want to hear that. Believe me I feel strong about the theory, but I wont try to play Dr and hypothesize why yours or mine didnt work. It just didnt. Deal with it people. This isnt going to help everyone. Its not negativity but rather reality. If you cant tell the truth without people jumping down your throat how will we ever get the real assesment of this treatment? A few blips? Are you kidding me? They arent blips, they are giant craters. We have a long long way to go.

[BooBear]

Elli, first my thoughts and prayers go to you and to Chris. I won't debate you on your experience, as that would be pompous- only you had your experience. But I thank you for sharing that experience, because we are all learning as we go.

Are you taking anything to help rid your body of the excess iron? I am just wondering.

[silverbirch]

Ellibertato Millertime ddee farmer

Welcome to the forum

Thank you for your updates its a good thing that you all report back informing us that its not as cut and dry as per your experience and this I value very much.

I have searched on the "CCSVI Tracking Project "and can not find a thread for any of the above members.

The thread is very informative and a usefull tool to get an understanding of a members condt pre CCSVI

The information on this thread is usefull in so much as other members can get a better understanding of a person "CCSVI journey" prior to asking questions therefore ruleing out some questions e.g were you on any DMD prior to treatment , what was your status of MS prior to treatment , how long have you been DXMS etc

Your input is very important to me good or bad

Silverbirch

[marcstck]

Elli, first my thoughts and prayers go to you and to Chris. I won't debate you on your experience, as that would be pompous- only you had your experience. But I thank you for sharing that experience, because we are all learning as we go.

Are you taking anything to help rid your body of the excess iron? I am just wondering.

The fixation on iron deposition and its role in CCSVI could very well be misguided, and a huge red herring that is leading people down the wrong path.

Iron deposits in the brain are seen in many, if not most, neurodegenerative disorders. These disorders (Parkinson's, Alzheimer's, ALS, etc.) have nothing to do with vascular issues.

The simple fact of the matter is that cells contain iron, and when they die, that iron is released. It is quite likely that the iron deposition being detected in MS is the result of cell injury and death, not the cause of it. I've been told this by many physicians and medical experts, including doctors at the National Institutes of Health, and representatives from the Myelin Repair Foundation (who are optimistic that CCSVI will prove to be a significant piece of the MS puzzle).

The blood flow disruption caused by venous blockages have the potential to do plenty of damage on their own, leading to gray and white matter injury and atrophy, without having anything to do with iron deposition.

[elliberato]

You missed your calling Kamikaze. You should have been a Dr. You still could. You are one bright hambre'. I love you man!

[BooBear]

Kamikaze, I don't necessarily disagree with you. I just think we need to learn more.

There are also lots of opinions out there that link the lack of a balance of iron (my words) to various neurological disorder, such as MS. Too little iron, and we don't have the necessary components to form myelin at all. Too much, though, and we could have other issues.

It could be genetics, Marc, that determines whether we develop MS versus Alzheimers. Or, it could be the vascular tie. But I know that when I was on the Swank diet (with no red meat the first year at all)- I felt great.

Not saying that iron is the answer, but I am not willing to write it off as a red herring yet either.

[cheerleader]

The simple fact of the matter is that cells contain iron, and when they die, that iron is released. It is quite likely that the iron deposition being detected in MS is the result of cell injury and death, not the cause of it. I've been told this by many physicians and medical experts, including doctors at the National Institutes of Health, and representatives from the Myelin Repair Foundation (who are optimistic that CCSVI will prove to be a significant piece of the MS puzzle).

The blood flow disruption caused by venous blockages have the potential to do plenty of damage on their own, leading to gray and white matter injury and atrophy, without having anything to do with iron deposition.

Agree 100%, Marc. Iron can simply be the remnants of axonal death. My personal theory has always been related to ischemia and hypoxic injury due to venous insufficiency. That's just because Jeff's first flare was after a high altitude trip, and I've always felt that triggered the coagulation cascade in him. Also, the angioplasty relieved many symptoms Dr. Dake linked to venous insufficiency (fatigue, cog fog, spasms, urgent bladder--also found in people who suffer carbon monoxide poisoning and low O2)

Now the CCSVI docs are discussing Wallerian Degeneration and MS, and this would certainly be tied to axonal death and the iron trail. It would also explain why MS would continue to progress after the inflammatory stage, and why some do not see any benefit from CCSVI angioplasty. Just wrote about this new info here.
http://www.thisisms.com/ftopict-11930.html
cheer

[leooreo]

It is simple,

MS is a money machine for all claiming autoimmunity (my doc gets 135.00 - 195.00 for a 10 minute visit (and he does nothing for me except as how am i doing, -

Endothelium dysfunction is responsible for many chronic illnesses - HUGE PROFITS ALL AROUND - why cure anything. Research Endothelium system and how you might help fix it.

[cheerleader]

It is simple,

MS is a money machine for all claiming autoimmunity (my doc gets 135.00 - 195.00 for a 10 minute visit (and he does nothing for me except as how am i doing, -

Endothelium dysfunction is responsible for many chronic illnesses - HUGE PROFITS ALL AROUND - why cure anything. Research Endothelium system and how you might help fix it.

thanks for the plug, leo check's in the mail....
http://www.facebook.com/note.php?note_id=123456602210
for those who want the shortened version of the Endothelial Health paper, the Alliance website now hosts the paper under the topic "Helping Yourself"
www.ccsvi.org
cheer