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Please see my latest video update 7 weeks post procedure (link below). I saw my Neuro yesterday and he told me he has never seen me so well.
I see the Prof in three weeks for a follow up, after my doppler ultrasound I am aware that I have some renarrowing in the right. Overall my bloodflow appeared good and I haven't gone backwards in my improvements. I am still extremely happy I have had the procedure.
Kezz, I'm waiting for my friend with MS to visit me in one hour and we'll watch it with many thanks, together.
In the mean time, has anyone read this? They really are forcing us and our doctors to keep it on the 'lowdown', very concerning for those of us who still havent had the procedure....
friday_fc wrote:Kezz, I'm waiting for my friend with MS to visit me in one hour and we'll watch it with many thanks, together.
In the mean time, has anyone read this? They really are forcing us and our doctors to keep it on the 'lowdown', very concerning for those of us who still havent had the procedure....
Yes I posted this on the Facebook group. I think this is scaremongering. Seriously, their best tactic to keep us quiet is to use fear. Fact is this is happening in pockets all over the world (look at Kuwait). I am hopeful the momentum will continue to roll on. In the meantime the big players (Doc Zamboni et al) keep talking and the 'anecdotal' evidence keeps mounting up.
yeah ...the forces shutting down angioplasty treatments of PwMS are not behaving in the patient's best interest - that's for sure. Even in places where the liberation has been embraced..such as Kuwait...the neurologists gave it a go (to shut the treatment plans down, that is).
It's been said that agents blocking this treatment are actually putting themselves at risk of being sued themselves - it's without doubt discrimmination to deny PwMS a treatment which is routinely performed on others with blocked veins.
hwebb wrote:
It's been said that agents blocking this treatment are actually putting themselves at risk of being sued themselves - it's without doubt discrimmination to deny PwMS a treatment which is routinely performed on others with blocked veins.
This approach might be successful, especially in the outrageously litigious USA. It's certainly something we could all casually mention to our neuros in the small pauses in their streams of negativity.
We could also mention that, because of existing damage, PwMS are still going to need drugs to treat symptoms, so not much will change for the drug mafia when CCSVI is proven to be the major factor in MS. Hopefully, the neuros will feed that info back to the drug barons and the pressure might come off the gutless hospital board wimps who are shutting down the good guys.
Folks,
I have been told that a Neurologist in Auckland, NZ, supposedly the primo MS specialist there, is a CCSVI denier. He even made the statement that the treatment (angioplasty) "is killing patients".
As we all know, there are only two known negative events since the Liberation Treatment has been performed. One was a stent that moved to the patient's heart, and heart surgery was required to remove it. He did not die.
The other event was a patient who died of a brain haemorrhage after the treatment. No evidence has ever been presented that the death was a direct result of the treatment.
So, that's one death that might be connected with the angioplasty, but just as easily might not.
If your neuro tries this crap on you, explain the above, but also ask him or her how many people have died from Tysabri.
He or she won't know, or will pretend they don't know. Here are the latest statistics for your edification:
"April 15, 2010 3:28 PM EDT
According to some headlines from the Dow Jones Newswire, Biogen (Nasdaq: BIIB) has reported two more deaths from PML in Tysabri patients over the past month. The company said that, as of April 6, 46 cases of PML were reported, eventually leading to 11 deaths."
PML is progressive multifocal leukoencephalopathy, and it's very nasty.
A recent update on the National Multiple Sclerosis Society Website reports the following dangerous side effects from Tysabri:
"The FDA prescribing information about Tysabri includes a black box warning about the risk of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability."
I think we should all get ready (especially those who are newly diagnosed) for a possible class action agaisnt those who are tying to prevent ballon angioplast for CCSVI. Those "nay"sayers are diectly responsible for any damage done to our CNS since, say, January 2010.
Gordon & Slater ( or similar law firm) may take it up like the asbestos case.
Just one minor point to your post - the possible CCSVI death was a patient who had received stent(s) and was on blood thinners. It was the effect of the blood thinners which may have contributed to her death as a result of a stroke, I believe.
Brainteaser wrote:
Just one minor point to your post - the possible CCSVI death was a patient who had received stent(s) and was on blood thinners. It was the effect of the blood thinners which may have contributed to her death as a result of a stroke, I believe.
Phil
Thanks Phil, I'd forgotten that bit of info. I guess that makes the procedure indirectly responsible for her death, so we have to concede on that one.
lodgernz wrote:As we all know, there are only two known negative events since the Liberation Treatment has been performed.
Do not forget Rici http://www.thisisms.com/ftopict-10732.html. And to include the minor negatives, some people have come out with what I think was called "ancillary nerve damage"; which heals by itself.
Sorry I haven't been in contact, but I didn't get my 'provisional' results until Friday.
There report says 'on the left side the upper internal jugular vein is a little flattened for a short segment of 1-2 cm with smooth tapering appearances... most likely representing transient flow phenomenon.
The conclusion was:
NO venous thrombosis is seen in the brain. In the neck and right internal jugular vein is a dominant drainage is entirely patent. There is some narrowing of the C1 level of the upper left internal jugular vein which probably represents flow phenomenon rather than obstruction.
Also...a new 1.5 cm lesion was found in the white matter area.
So, I am going to send the report to the Radiologist in Sydney and see what he has to say, but I don't think I will be a candidate for angioplasty treatment.
Will keep you posted. Hope everyone is well
Sneaky P
There's not brain lesions...their bright ideas.
DX July 1st 2009 RRMS
