ccsvi in canada, please humour me. questions.

[kiwee]

after reading this article, i am even more stumped........

http://liberationtreatmentccsvi.com/201 ... in-canada/

Undeterred, she travelled to a Detroit hospital in February, paying US$3,000 for CCSVI imaging based on Zamboni’s complex protocol. Cooney returned to her neurologist with scans showing severe stenosis in two jugular veins. Still, he refused to give her a referral. Her GP was more helpful, calling vascular specialists—all of whom said that because Cooney has MS, she needed a neurologist’s referral. Finally, she emailed a cardiologist who had treated a friend. “I told him I had headaches, numbness in my left arm, pain in my chest, and severe stenoses of my jugular veins—all of which is true,” she says. She didn’t mention she had MS or that the reason she wanted to see him was so that he could track her progress after CCSVI treatment, which she received in the U.S. last week. He agreed to see her next month. Cooney regrets the omission, she says: “I want to be able to tell my doctor everything.”

let me get this straight;
with a referral from a neuro to a vascular specialist, one can be treated for ccsvi here in canada?

[jimmylegs]

i believe so. that's the thing that's driving people crazy.

if you do not have pre-existing ms, and your veins are blocked, there's treatment. if you do have an MS dx, your symptoms get labeled 'MS' and they don't bother to think of any venous issues as a treatable comorbidity.

the argument appears to be, 'there is no proof that ccsvi causes/is related to/affects ms, therefore we will not pay for ms patients to be tested, until further research to establish the degree of association is completed'. what i find weird is the general reluctance nationwide to start looking into it. with proper replication studies.

beyond that there is the whole issue of figuring out, perhaps through some sort of retrospective study, can we get a better handle on who the treatment can help and who might be disappointed or worse, actually hurt by it?

if each province and territory in canada said okay, starting today we will pay for ccsvi testing and treatment for every interested ms patient in canada, i wonder how that would pan out.

gotta split for work!

[kiwee]

so my feelings as of right now are the following;
- go to india
- get the ndm1 bug
- bring it back to canada
- go to a local hospital and let loose
- all while yelling, you guys wouldn't give me what i needed, so i went elsewhere and brought back a 'gift'
how stupid is this? we are practically being forced to seek out medical attention from places, 1 of which has a bug that has the potential to turn into a global pandemic and i am going to put myself right into the frying pan and bring back a risk to my homeland. wtf is wrong with this picture? i feel so setback, disillusioned, no faith in the health system. my entire faith and belief system is now shaken and i am practically at a loss for words.

[frodo]

i believe so. that's the thing that's driving people crazy.

if you do not have pre-existing ms, and your veins are blocked, there's treatment. if you do have an MS dx, your symptoms get tossed in the MS round file and they don't bother to think of any venous issues as a treatable comorbidity.

Just one idea. As far as I know there is no test for MS with 100% reliability. Therefore if we ask a neuro to SIGN a certificate saying FOR SURE that we have MS he is forced to refuse.

Maybe we can get rid of our MS diagnosis in this way. We request by some legally admisible way a 100% confirmation of our MS diagnosis and our neuro will have to deny our request. Then officially we are not MS patients anymore.

And then we qualify for any vascular tests and procedure.

[kiwee]

the issue here is not our neuros.
it is getting a vascular surgeon to 'overlook' our diagnoses.
at that point, we would be able to get treated.
i have been hearing more and more of surgeons making 'exceptions' in certain instances to treat people for angioplasty.
why the hell can't these guys get up and say 'no, i am treating this patient for their symptoms NOT their medical diagnoses?'
talk about disheartening.........

[lovebug]

In Canada folks this is like `fighting the war on MS but loosing the battle`. As soon as any of our health care providers find out we have MS its like we have the `PLAGUE`. Nobody wants to treat us. And I can`t see things changing anytime to soon. We have been forced to seak out other countries to provide for our health care( angioplasty/stenting). Sad state of affairs. And we are stuck in the middle of this war.

[kiwee]

i am going to be watching how health canada treats the issue of the superbug, but if nothing limiting travel comes out6, i;kk be heading to delhi for the procedure.
spoke to my neuro yesterday and the most gratifying part is going to be when i get back i am seeing him for my yearly clinical work up and mri. he and i are bth anxious to see the result. i set up the appt 2 weeks after i get back to try and get as much healing in as possible. iwould have waited longer, but he leaves for florida (snowbird) at the end of oct.
thank you very much guys. it really means a lot to have ppl out in cyberspace that i can throw the ball around with.

[1eye]

Faster than a honda civic, more powerful than the local mayor, bends spoons in his bare legs. Look! Up in the sky! It's a Bird! It's a Plane! It's Superbug! Yes, it's Superbug. Disguised as french fries, mild-tasting appetizer for the Daily Menu, fights a never ending battle for fruits, vegetables, and the curds and whey.

The Globe and Mail had a story about how health authorities are worried about Superbug. I think he is really a Hero, and we should bring more of him back from India. He's a crime-fightin guy.

But if some people are getting after-care by certain well-known Surgeons, and they really went to India originally, isn't it Dangerous to go in to see them now? Are they not Contaminated by Rumour and Innuendo? I guess we'll know when Superbug flies next to Egypt, Poland, Jordan, Kuwait, and Italy. He must be traveling on a vector of Medical Tourism, sustained by Medical Bullshit.

Oh, dear. Am I getting cynical?

[cheerleader]

after reading this article, i am even more stumped........

http://liberationtreatmentccsvi.com/201 ... in-canada/

Undeterred, she travelled to a Detroit hospital in February, paying US$3,000 for CCSVI imaging based on Zamboni’s complex protocol. Cooney returned to her neurologist with scans showing severe stenosis in two jugular veins. Still, he refused to give her a referral. Her GP was more helpful, calling vascular specialists—all of whom said that because Cooney has MS, she needed a neurologist’s referral. Finally, she emailed a cardiologist who had treated a friend. “I told him I had headaches, numbness in my left arm, pain in my chest, and severe stenoses of my jugular veins—all of which is true,” she says. She didn’t mention she had MS or that the reason she wanted to see him was so that he could track her progress after CCSVI treatment, which she received in the U.S. last week. He agreed to see her next month. Cooney regrets the omission, she says: “I want to be able to tell my doctor everything.”

let me get this straight;
with a referral from a neuro to a vascular specialist, one can be treated for ccsvi here in canada?

Actually, no. This all happened after her treatment. Rebecca Cooney was treated for CCSVI with angioplasty in the US. She simply tried to get follow up care in Canada. Even follow up was denied to her, because of an MS dx.

This is a real problem for Canadians traveling for treatment....they can't even get docs back home to check for restenosis or blood coagulation numbers upon return home.
Check out Angioplasty for All. They are working hard to change this.
http://angioplastyforall.com/

cheer

[frodo]

Actually, no. This all happened after her treatment. Rebecca Cooney was treated for CCSVI with angioplasty in the US. She simply tried to get follow up care in Canada. Even follow up was denied to her, because of an MS dx.

Could we reject our MS diagnosis then?

According to McDonald criteria (the current standard) "the only proved diagnosis of MS can be made upon autopsy, or occasionally upon biopsy, where lesions typical of MS can be directly detected through standard histopathological techniques"

http://www.msdiagnosed.org/McDonald.pdf

Therefore, without a biopsy there is a reasonable doubt about the MS condition. After that, any article that says that vascular diseases can "mimic" (I remember some of them in this forum) MS lesions should be enough to get a vascular test.

[fiddler]

It's not a clear cut case that MSers can't get follow-up in Canada. Besides the fact that I and others who were liberated elsewhere are now able to have our follow-up in Barrie, Ontario, I have never had any indications (from my GP or neuro) that complications due to the treatment wouldn't be treated. I'm sure that some docs have told Canadians otherwise, but there are a$$holes everywhere, and these particular ones should be reported to the appropriate College of Physicians.

What I have not seen in Canada (except in places like Dr. McDonald's clinic) is an ACTIVE interest in learning how to do CCSVI assessment, treatment and follow-up (including studying returnees). I have heard, anecdotally, that there ARE some taking an active interest and even seeking training, but that they are doing it "under the radar" to avoid confrontation with medical societies. For the rest: shame on these so-called professionals!
...Ted

[fiddler]

Note to tazbo (and everyone): PMs don't always get sent, they sit in my outbox. Please. email me with your request.
...Ted

[esta]

as a canadian, going for my 2nd time to poland, i feel like a medical refugee...especially after seeing my dr. its all true, canada has dissapointed and failed me as a citizen, i am outraged, and instead of a canadian flag, i'm buying a polish one...and hanging it...maybe we all should fly the homeland of ourliberation...a quiet statement, then? the news???????????????

[1eye]

Guess I gotta buy a US flag (!) When I was traveling down the Saint Lawrence river coming back from the UK on the second-last transatlantic ocean-liner trip of the Stefan Batory, there was (is?) a guy living on the riverbank who had a collection of national anthems. He knew the home countries of every ship that passed, and he would regale them with a PA system playing their home national anthem as they passed. So we got to hear the Polish national anthem as we went by. I don't know if it's changed since the fall of the USSR, or even what it sounded like then, but it was a very nice thing to hear for the crew, I think. This was summer 1987.

[1eye]

Could we reject our MS diagnosis then?

I renounced mine elsewhere on this forum.