MS Discuss: Where do you stand regarding this research?

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MikeH
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Topic: Where do you stand regarding this research?
Posted: 20 Feb 2010 at 2:58pm

Good afternoon,
Just received a new article regarding CCSVI results from Buffalo and Georgetown, I must admit at being one of the skeptics when this was first spoken about yet today I find my curiosity is growing to the point where I'm questioning whether or not getting tested would make sense after all.

Due to the length of the article see link below, the article was received on behalf of Irwin Mortman, autoimmune list of the autoimmune community.
If this type of information is of interest you may subscribe free of charge with the following link

The AUTO-IMMUNE mailing list is powered by L-Soft's renowned
LISTSERV(R) list management software. For more information, go to:

Read the complete article named

CCSVI and Multiple Sclerosis: Integrating New Data to Help Guide Actions

http://www.direct-ms.org/

Edited by MikeH - 22 Feb 2010 at 8:55am

Take Good Care
Michael

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barbara
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Posted: 02 Mar 2010 at 8:27pm

Hi Mike - was very hopeful of this therapy - made sense to me BUT have heard nothing really positive about it - will wait and see what testing shows - don't really understand why Canada doesn't have anything that can read the sonograms.

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Miyoko
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Posted: 03 Mar 2010 at 3:12pm

Hi Mike

Thanks for your posting. I read with a great interest, the article by Ashton Embry. Like you I did not think much of Zamboni's original claim on CCSVI vs MS, but after reading the summary by Embry on the Buffalo & Georgetown studies, I am now curious if I have CCSVI or not. I wish someone in Canada will participate on this study. ...Or can we organize a group bus trip to Buffalo. If a treatment of CCSVI slows down further progression of MS, it is certainly worth getting the test.

Miyoko

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MikeH
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Posted: 04 Mar 2010 at 11:20am

Hello,

To the best of my knowledge the study in Buffalo consisted of determining whether or not vein constriction existed within the MS population more so than people not affected by MS that was the extent of the study no corrective procedures were performed.

It was basically a study to see if there was a cause/effect to support the hypothesis presented by Dr. Zamboni.

I believe 1600 people were recruited for this study and the outcome leaves little doubt of a strong correlation which merits further investigation. Another very important finding in that they were able to determine the constriction came from birth and not from some other event suggesting that it may very well play a part in the development of MS.

Unfortunately it will take time to develop protocols necessary to provide the proper imaging techniques required to see the constrictions and then possibly select a few patients to undergo the surgery followed by monitoring the outcome probably over a period of a few years.

Most doctors/surgeons tend to be conservative in their approach to new findings and treatments as patients we may find that they should adopt these hypotheses more quickly especially when there is a strong relationship found in the initial studies yet I believe the oath they take known as the Hippocratic oath and the phrase "shall do no harm" tends to overshadow everything else.

Of course this is only my opinion.

PS: there is one clinic in Vancouver that will for a cost provide the information you may be looking for. The address follows just copy and paste it onto your_address bar.

http://www.nationalsurgery.com/ccsvi.html

One last thing I should mention is that in cases where patients have undergone surgery using the balloon technique to expand the area constricted 47% have over time retrogressed to where they were.

Michael

Take Good Care
Michael

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Miyoko
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Posted: 05 Mar 2010 at 9:08am

Hi Mike

Obviously, you have done lots of reading on CCSVI. The cause of it thought to be congenital....then I presume certain percentage of people in any part of the world have this problem. If so, how do they explain the epidemiological finding that MS incidence increases as latiutde increases. I do accept that higher percentage of us, MS patients have this CCSVI condition, but I still feel there are more to the problem...possibly vitamin D metabolic problem, some epigenetic problem....

Once CCSVI diagnosis is done, the treatment is angioplasty !? I do not favor this treatment, since the physical stimulation in order to widen the vein will stimulate the healing cell populations such as fibroblasts which eventually narrow the vessel again as we have seen in heart treatments.

I think I will stick to my Betaseron, diet and exercise for my MS.

Edited by Miyoko - 05 Mar 2010 at 2:15pm

Miyoko

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barbara
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Posted: 08 Mar 2010 at 10:57am

Holy Miyoko who are you - don't have a clue what you said... but I agree with Vitamin D - we get so little sun, and diet

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MikeH
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Posted: 08 Mar 2010 at 1:22pm

Hello,

Yes I have done a lot of reading on the subject yet there are so many new discoveries it's difficult to keep abreast of all the information. Quite often I find it's information overload.

I do not believe this study involved other patients than the limited number by the doctor in Italy and the trials which are going on in Buffalo, Georgetown USA and Vancouver Canada, I think that's it in terms of coverage at least geographically if you will. The endpoint of the study was to determine if a correlation existed. From what I understand that was the extent of the study they found other things along the way yet the primary goal was simply to identify the relationship.

This is probably where the term multifactorial fits in, I agree there is no doubt the further we go from the equator the higher the incidence of MS hence the recent hypothesis regarding vitamin D. There are so many possibilities, factors encompassing everything from genetic predisposition to the environment that may influence disease development. Trying to piece all of this together is quite the task, probably why so many scientists are involved in research for this magical key which will in my humble opinion when found unlock the cause of several other similar neurological diseases.

Of course having primary progressive MS probably gives me a different outlook on things for instance diagnosed in 1994 I've been wheelchair-bound for the past five years and slowly losing my autonomy. Sometime in 1997 if memory serves me correctly I participated on the Promise Trial to see whether Copaxone would be effective in reducing the rate of progression, after four years of taking the medication and not the placebo the results were deemed to have reached no conclusive results therefore the trial was stopped. There have been no other trials for primary progressive except for one which started a few weeks ago, I no longer qualify since I can't walk the 25 feet or perform the peg test, as a result I sit wait reading all I can.

If nothing else the amount of publicity brought on by this CCSVI hypothesis has placed our disease on the forefront which in itself is priceless, you simply can't buy that type of advertising.

Oh before I forget they do not utilize stents as they do when performing angioplasty the risk of using these within veins is deemed to hazardous "if they become dislodged its a direct path to the heart". They use a balloon which basically inflates the constricted area opening the passage.

That's it for me

thanks for your reply I was just wondering how other people felt.

Edited by MikeH - 08 Mar 2010 at 1:34pm

Take Good Care
Michael

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Miyoko
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Posted: 08 Mar 2010 at 6:14pm

Thanks, Mike for your clarification on the matter. I do now understand you. I am not doing enough studies on my own disease.... There seem to be so much difference among subtypes of MS in terms of the degree of clinical symptoms. Is the pathogenesis all the same among the subtypes, i.e. demyelination of axons ?? Then why the progressive MS patients do not show recovery in between episodes like us, RRMS ? Is the BBB of progressive people so porous that the toxic T-cells traffic into the central nervous system without any barrier ... and somehow interferon or anything else do not protect the BBB effectively ?? So many questions...even neurology texts do not have answers.

Miyoko

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Miyoko
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Posted: 08 Mar 2010 at 6:18pm

Hi Barbara,

Sorry my post was not very clear to you. I was the head of research for a biotechnology company, and developed diagnostic kits for heart attach and stroke...hence a bit of knowledge in the field. I am from Japan, so you must excuse my poor English. I am now retired from work, and am a 'full-time' MS patient. MS cases are low in Japan. I am happy to be able to communicate with so many people here in Canada.

Miyoko

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MikeH
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Posted: 09 Mar 2010 at 2:57pm

Could someone please explain approval process for posts?

Michael

Edited by MikeH - 10 Mar 2010 at 6:12pm

Take Good Care
Michael

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Topic: Where do you stand regarding this research?
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Author	Message
MikeH Groupie Joined: 15 Jul 2009 Location: Canada Online Status: Offline Posts: 76	Topic: Where do you stand regarding this research? Posted: 20 Feb 2010 at 2:58pm
	Good afternoon, Just received a new article regarding CCSVI results from Buffalo and Georgetown, I must admit at being one of the skeptics when this was first spoken about yet today I find my curiosity is growing to the point where I'm questioning whether or not getting tested would make sense after all. Due to the length of the article see link below, the article was received on behalf of Irwin Mortman, autoimmune list of the autoimmune community. If this type of information is of interest you may subscribe free of charge with the following link The AUTO-IMMUNE mailing list is powered by L-Soft's renowned LISTSERV(R) list management software. For more information, go to: Read the complete article named CCSVI and Multiple Sclerosis: Integrating New Data to Help Guide Actions http://www.direct-ms.org/ Edited by MikeH - 22 Feb 2010 at 8:55am
	Take Good Care Michael
	IP Logged

barbara Senior Member Joined: 07 Oct 2006 Location: Canada Online Status: Offline Posts: 376	Posted: 02 Mar 2010 at 8:27pm
	Hi Mike - was very hopeful of this therapy - made sense to me BUT have heard nothing really positive about it - will wait and see what testing shows - don't really understand why Canada doesn't have anything that can read the sonograms.
	IP Logged

Miyoko Groupie Joined: 07 Nov 2007 Location: Canada Online Status: Offline Posts: 80	Posted: 03 Mar 2010 at 3:12pm
	Hi Mike Thanks for your posting. I read with a great interest, the article by Ashton Embry. Like you I did not think much of Zamboni's original claim on CCSVI vs MS, but after reading the summary by Embry on the Buffalo & Georgetown studies, I am now curious if I have CCSVI or not. I wish someone in Canada will participate on this study. ...Or can we organize a group bus trip to Buffalo. If a treatment of CCSVI slows down further progression of MS, it is certainly worth getting the test.
	Miyoko
	IP Logged

MikeH Groupie Joined: 15 Jul 2009 Location: Canada Online Status: Offline Posts: 76	Posted: 04 Mar 2010 at 11:20am
	Hello, To the best of my knowledge the study in Buffalo consisted of determining whether or not vein constriction existed within the MS population more so than people not affected by MS that was the extent of the study no corrective procedures were performed. It was basically a study to see if there was a cause/effect to support the hypothesis presented by Dr. Zamboni. I believe 1600 people were recruited for this study and the outcome leaves little doubt of a strong correlation which merits further investigation. Another very important finding in that they were able to determine the constriction came from birth and not from some other event suggesting that it may very well play a part in the development of MS. Unfortunately it will take time to develop protocols necessary to provide the proper imaging techniques required to see the constrictions and then possibly select a few patients to undergo the surgery followed by monitoring the outcome probably over a period of a few years. Most doctors/surgeons tend to be conservative in their approach to new findings and treatments as patients we may find that they should adopt these hypotheses more quickly especially when there is a strong relationship found in the initial studies yet I believe the oath they take known as the Hippocratic oath and the phrase "shall do no harm" tends to overshadow everything else. Of course this is only my opinion. PS: there is one clinic in Vancouver that will for a cost provide the information you may be looking for. The address follows just copy and paste it onto your_address bar. http://www.nationalsurgery.com/ccsvi.html One last thing I should mention is that in cases where patients have undergone surgery using the balloon technique to expand the area constricted 47% have over time retrogressed to where they were. Michael
	Take Good Care Michael
	IP Logged

Miyoko Groupie Joined: 07 Nov 2007 Location: Canada Online Status: Offline Posts: 80	Posted: 05 Mar 2010 at 9:08am
	Hi Mike Obviously, you have done lots of reading on CCSVI. The cause of it thought to be congenital....then I presume certain percentage of people in any part of the world have this problem. If so, how do they explain the epidemiological finding that MS incidence increases as latiutde increases. I do accept that higher percentage of us, MS patients have this CCSVI condition, but I still feel there are more to the problem...possibly vitamin D metabolic problem, some epigenetic problem.... Once CCSVI diagnosis is done, the treatment is angioplasty !? I do not favor this treatment, since the physical stimulation in order to widen the vein will stimulate the healing cell populations such as fibroblasts which eventually narrow the vessel again as we have seen in heart treatments. I think I will stick to my Betaseron, diet and exercise for my MS. Edited by Miyoko - 05 Mar 2010 at 2:15pm
	Miyoko
	IP Logged

barbara Senior Member Joined: 07 Oct 2006 Location: Canada Online Status: Offline Posts: 376	Posted: 08 Mar 2010 at 10:57am
	Holy Miyoko who are you - don't have a clue what you said... but I agree with Vitamin D - we get so little sun, and diet
	IP Logged

MikeH Groupie Joined: 15 Jul 2009 Location: Canada Online Status: Offline Posts: 76	Posted: 08 Mar 2010 at 1:22pm
	Hello, Yes I have done a lot of reading on the subject yet there are so many new discoveries it's difficult to keep abreast of all the information. Quite often I find it's information overload. I do not believe this study involved other patients than the limited number by the doctor in Italy and the trials which are going on in Buffalo, Georgetown USA and Vancouver Canada, I think that's it in terms of coverage at least geographically if you will. The endpoint of the study was to determine if a correlation existed. From what I understand that was the extent of the study they found other things along the way yet the primary goal was simply to identify the relationship. This is probably where the term multifactorial fits in, I agree there is no doubt the further we go from the equator the higher the incidence of MS hence the recent hypothesis regarding vitamin D. There are so many possibilities, factors encompassing everything from genetic predisposition to the environment that may influence disease development. Trying to piece all of this together is quite the task, probably why so many scientists are involved in research for this magical key which will in my humble opinion when found unlock the cause of several other similar neurological diseases. Of course having primary progressive MS probably gives me a different outlook on things for instance diagnosed in 1994 I've been wheelchair-bound for the past five years and slowly losing my autonomy. Sometime in 1997 if memory serves me correctly I participated on the Promise Trial to see whether Copaxone would be effective in reducing the rate of progression, after four years of taking the medication and not the placebo the results were deemed to have reached no conclusive results therefore the trial was stopped. There have been no other trials for primary progressive except for one which started a few weeks ago, I no longer qualify since I can't walk the 25 feet or perform the peg test, as a result I sit wait reading all I can. If nothing else the amount of publicity brought on by this CCSVI hypothesis has placed our disease on the forefront which in itself is priceless, you simply can't buy that type of advertising. Oh before I forget they do not utilize stents as they do when performing angioplasty the risk of using these within veins is deemed to hazardous "if they become dislodged its a direct path to the heart". They use a balloon which basically inflates the constricted area opening the passage. That's it for me thanks for your reply I was just wondering how other people felt. Edited by MikeH - 08 Mar 2010 at 1:34pm
	Take Good Care Michael
	IP Logged

Miyoko Groupie Joined: 07 Nov 2007 Location: Canada Online Status: Offline Posts: 80	Posted: 08 Mar 2010 at 6:14pm
	Thanks, Mike for your clarification on the matter. I do now understand you. I am not doing enough studies on my own disease.... There seem to be so much difference among subtypes of MS in terms of the degree of clinical symptoms. Is the pathogenesis all the same among the subtypes, i.e. demyelination of axons ?? Then why the progressive MS patients do not show recovery in between episodes like us, RRMS ? Is the BBB of progressive people so porous that the toxic T-cells traffic into the central nervous system without any barrier ... and somehow interferon or anything else do not protect the BBB effectively ?? So many questions...even neurology texts do not have answers.
	Miyoko
	IP Logged

Miyoko Groupie Joined: 07 Nov 2007 Location: Canada Online Status: Offline Posts: 80	Posted: 08 Mar 2010 at 6:18pm
	Hi Barbara, Sorry my post was not very clear to you. I was the head of research for a biotechnology company, and developed diagnostic kits for heart attach and stroke...hence a bit of knowledge in the field. I am from Japan, so you must excuse my poor English. I am now retired from work, and am a 'full-time' MS patient. MS cases are low in Japan. I am happy to be able to communicate with so many people here in Canada.
	Miyoko
	IP Logged

MikeH Groupie Joined: 15 Jul 2009 Location: Canada Online Status: Offline Posts: 76	Posted: 09 Mar 2010 at 2:57pm
	Could someone please explain approval process for posts? Michael Edited by MikeH - 10 Mar 2010 at 6:12pm
	Take Good Care Michael
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