Tysabri Recovery Series - CCSVI

[apsugovs32]

join my group on facebook... ccsvi and the liberation treatment in the USA. help me fight

[fiddlealiddletees]

Thanks

[vbeachy]

@fiddlealiddletees

My Pleasure

[alexgumby]

There is a % of patients who were unresponsive to Zamboni's treatment. I do hope in your case that the procedure, if found to be scientifically supported by randomized trials, that it works out for you. I work with MS patients and I love seeing their symptoms diminish because the biologics are working for them. MRI scans need to be read by a technician/doctor who is familiar with the research and what to look for. Some MD is accepting scans for evaluation. If I remember his name I'll repost.

[greyman97]

Verne,

one rectification - CCSVI is not the name of the procedure, it's the name of the condition - Chronic CerebroSpinal Venous Insufficiency

[vbeachy]

Yes, you are right...BALLOON ANGIOPLASTY.

[boorashid12]

Thanks

[vbeachy]

You're welcome.

[jayoatru]

Great video. Thanks for you hopeful message and enthusiasm.

[vbeachy]

Thank you...I appreciate it!

[haz740]

Hi, I have all your recovery series videos I have suffered with ms for 10 years about start tysabri next week wanted to ask u about smoking I mean I was a regular smoker and I had to stop because I have to start tysabri wanted to know wether smoking is not allowed or can cause pml ??? with taking tysabri.

thanks

[vbeachy]

I haven't heard any correlation between smoking/Tysabri and PML No one has ever told me anything about smoking and taking Tysabri. And...I am a smoker.

[haz740]

Thanks alot great help My doc s always say dnt smoke quit smoking etc if ur gonna start tysabri makes feel alot better confident on taking this med if u know i mean when I hear it from a person who has been on it for nearly 2 half 3 years thanks alot....

[kcsportsfan]

Here is something interesting to discuss with your doctor. In Jan or Feb there will be an assay available that will test for the JCV virus. This will identify the 50% of patients that are at risk of PML. You must have the JCV virus to develop PML. So patients can get tested and feel secure that they will no develop PML. Hopefully this will lead to 10s of thousands suffering with MS trying tysabri and hopefully stabilizing or doing better.

[vbeachy]

I will ask him this week. I have my 6-month eval on Friday. :)

[nappycloud9]

This is my 3rd month off all ms drugs, they just don't work! Am suppose to start Tysabri, do u reccomend I start (scared of PML, am a mother of 3 kids), or should i push for this testing instead?

[vbeachy]

Hi;

I won't tell you to start or stop a drug because I think that is a decision each person has to make for themselves, but I will tell you what Tysabri has done for me: I am no longer in a wheelchair and I walk 2 miles a day. I am not worried about PML. It is now treatable (whereas 3 years ago it was considered fatal). I think CCSVI is about a year from being the normal treatment for MS, but I think it will be. Visit my website and email me with longer, or further, questions. Thanks!

[WithCourage2008]

Something is wrong with youtube! I wrote a comment on this video a few days ago and it didn't post :( I favorited the video also!!

Anyways, I just wanted to say that I love this video so much!! I TOTALLY agree with everything you said! You summarized CCSVI PERFECTLY! Thanks so much!

[vbeachy]

Thank you SO much Anna!

[qualisarx]

I have an appointment on the 15th. I live in buffalo and my nueroligist has close ties with the scool/hospital that is conducting the study so I will keep everyone in the loop so to speak. Keep all the info/videos flowing. Everyone is communicating and thus advances are being made as well and communicated. People are hearing our voices around the world now because we have united!

[vbeachy]

Good to hear that Daniel! I know I am interested in how it goes for you and I am sure a lot of others on YouTube are as well.

I totally agree about our voices here on YT being heard in the medical community. YOU are a big part of that Daniel, keep up the good work!

Vern

[sandywatts500]

Fantastic Daniel!  Please keep us up to date.

Thanks

Sandy

[gekiryudojo]

Ive been to the Doctors this morning He had not heard of CCSVI and Dr. Zamboni yet. but he does now!, he was very intrigued and interested and open to the idea of stenosis in the Carotid arties, he mentioned that there had been something about a similar vascular problem in epilepsy that he had read,The upshot is I am to have a Doppler ultrasound ASAP to check it out and then to be referred to a vascular surgeon /consultant so the ball is now rolling I will keep you in formed

Trev

[vbeachy]

AWESOME Trev! I will talk to my doctor today as well. Keep me informed!

Vern

[gekiryudojo]

I was in hospital today (unrelated) and I told the News to Everybody who would listen including Doctors Nurses et all. they ALL believe it! I said ask me anything and all of these people said why do we not know about this? So spread the word!(Ive lost count of the tears of joy Ive seen today!

[gekiryudojo]

I will keep you informed!

[vbeachy]

WAY, WAY COOL!

[kezzcass]

Wow - you are sticking your neck out. That is something to take notice of I think :) Thanks Vern!

[vbeachy]

Thanks Kerri

[laurenvparrott]

Thanks Vern - I totally agree with you!

[vbeachy]

Thanks Lauren;

I think this could be a key turning point.

[laurenvparrott]

I think so too!!

[tazscott14]

Hi Vern,

We need to shout the word CURE! There are a lot of people that make A LOT money from treatments. They do not want to hear that word- CURE. But we need to shout it out loud!

Take care,

Bill

[vbeachy]

I do agree, Bill. I think the MS Society ans others (drugmakers?) will likely try to downplay Zamboni's discovery.

[gekiryudojo]

It is always good to be cautious but this operation (the liberation) angioplasty it none invasive (and done all over the world every day in heart defects)

Dr. Zamboni have done the work on 150+ people it is about to be tested in the US on over 1000 people the Canadian and British MS societies are taking this seriously, it has been Done in northern Ireland and Poland

[gekiryudojo]

Im seeing my GP at 08:10am  tomorrow morning and I want to see a Cardiologist ASAP

Balloon me now! There is NOTHING to lose! It also MAKES sense!

Dr. Zamboni found that 100% of people with MS had defects in the Carotid and other veins I could go on but I will be doing more videos.

thanks for the video!

[vbeachy]

YES...it MAKES SENSE. "Ballon me now" is a great mantra!

[gekiryudojo]

Also "Pop My MS with a Balloon!"

:)

[vbeachy]

Ha!

[angelusa73]

Great video, Vern!

I am happy to see that you are hopeful about Dr. Zamoni's research too!

Hugs,

Angela

[vbeachy]

You Betcha!

Thanks Angela.

[qualisarx]

I agree norm. I heard you cannot take Tysabri during the trial though which is why I refused it. If this was wise only time will tell.

[vbeachy]

Thanks Daniel!

[sandywatts500]

Exciting times...thanks for the video!

We'll just wait and see...we do a lot of that don't we? LOL

btw I got sucked in to buying extra software to protect my computer against the horrors of Y2K (there's a sucker born every minute)

Sandy

[vbeachy]

So, YOU were the one that bought that software, eh? Tsk, tsk. Ha!

[irishbear76]

Vern,

Thank you for the acknowledgment.

I think that once all is said and done...

Dr. Zamboni's research will explain how CCSVI causes MS and how early dilation of the stenosed veins will prevent permanent damage. If that is not a cure I do not know what is. Obviously they cannot give someone a cure who has had catastrophic damage to their neurological system

Great job on the video and

THANKS again,

Your friend,

Mark

[vbeachy]

My pleasure Mark.

I completely agree.

Your friend,

Vern

[MSVlogSupport]

Great video Vern and as always the voice of reason.

I hope you are right that it is bubbling up and will gain speed. You know how these things work with the media better than most.

I agree about keep taking your medications!

I do think that it is a good thing that this has caused many people to start doing their own research.

Thank you for such a thoughful video and I will ease up on the media ;-)

Best to you,

Andrea

[vbeachy]

Ha! Thanks, Andrea. There are numerous valid points of contention with the media (I make a lot of them myself). I think any attempt to keep this down is like putting the Genie back in the bottle, or trying to put the toothpaste back in the tube.

[vbeachy]

Believe it or not...I WILL GLADLY BE "BALLOON BOY!"

[MsGirlOnline]

you are soo right! even Dr. Zamboni says its not a cure, he says its a treatment!

but hey! I could go for a treatment that involves a simple ballon!

[irishbear76]

Maria,

Dr. Zamboni is just being very guarded.

You must remember that he is early in his research and a much larger clinical trial must be done.

I guarantee you off the record with people from his team he is a little more forthcoming with his thoughts.

HE is about to be attacked and he must be very careful about how he presents this to the Neurology and Cardiovascular community. He is basically turning their world upside down.

This treatment has REVERSED the disease in people!!!!