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  • skeezix
    replied
    Originally posted by Michael J View Post
    Good afternoon,
    My wife has primary progressive MS. I have been trying to connect with Poland, Bulgaria and India to have a CCSVI test performed and the Liberation treatment should she quailfy.I have not been successful in getting any responses. Could someone assist in providing information on any place that is now providing this treatment. We live in Nova Scotia, Canada and are certainly willing to travel.
    Thanks so much
    Michael J
    Hi Mike,

    Don't know if this will help but there is a woman in NS that has had the liberation treatment done in Bulgaria. Her name is Maxine Leblanc- David. She is an activist for CCSVI in Nova Scotia. Google her and there might be some info you can use.

    There is also a Facebook group: CCSVI in MS for Nova Scotia.

    Good luck

    Leave a comment:


  • Michael J
    replied
    looking for assistance

    Good afternoon,
    My wife has primary progressive MS. I have been trying to connect with Poland, Bulgaria and India to have a CCSVI test performed and the Liberation treatment should she quailfy.I have not been successful in getting any responses. Could someone assist in providing information on any place that is now providing this treatment. We live in Nova Scotia, Canada and are certainly willing to travel.
    Thanks so much
    Michael J

    Leave a comment:


  • jiiimmm
    replied
    hello from brampton

    my wife just won the MS lottery I'm just looking to get more informed. It is quite the roller coaster as I'm sure you are all well aware of.

    Leave a comment:


  • YukonArthur
    replied
    Hi there from the Yukon,

    New forum member looking to connect with others and keep up to date on the happenings of the MS world.

    Little history: Moved to Whitehorse, Yukon in 2002 and was diagnosed with MS in 2003. After living with it for a few years it seems to be RRMS. Overall it is more of an annoyance than life altering but there are times of real struggle and frustrations.
    I used to work in kitchens as a chef but sharp and hot items are not conducive to MS symptoms. I went back to college for Anthropology/Archaeology and spent a few years loving being a student.
    I now work for a fair trade organic coffee roasters part time and enjoy knowing my job helps others in less fortunate places in the world.

    I'm looking forward to getting to know others here.

    Cheers!

    Arthur

    Leave a comment:


  • bravetiger
    replied
    I TOTALLY AGREE WITH THE NUTRITION CHANGE AND DETOX!!...

    Leave a comment:


  • ive68
    replied
    hi

    Hopefully not, if so please get on it right away dont settle for drugs off the bat if indeed you need them! Consider a dietary change and some form of detox in order to begin the fight! Good luck!
    Ivan

    Leave a comment:


  • LIMBO72
    replied
    Calgary, Alberta

    New to the forum. I've had two MRI's and am waiting to see the neuroligist. My doctor said the MRI report shows that I likely have MS, but not to panic??!! Now, the long drawnout wait to get into the neuro......could take a few months....argghhhh

    Leave a comment:


  • elmo2010
    replied
    Hi from Toronto

    I'm brand new here and I have just started my lurking for information. I was told this afternoon that I most likely have MS, but that this stage they call it CIS.

    Can anyone tell me what that is? i was too shell shocked earlier to ask all the questions that are poping in to my head now.

    Leave a comment:


  • Cherrymom
    replied
    UBC

    In the newspaper ad on it Dr Traboulsee said to wait to apply because it would take them a few months to get funding and all the resources in place to begin the study. But they are doing one. I have an appointment in a couple months with him and intend to ask.

    Did you see the article? It was actually very positive. They also have on their nurses line that if you are calling about the ccsvi to call the research line probably because they are getting so many calls.

    Leave a comment:


  • Share01
    replied
    Greetings gals,
    Ottawa here. I see a neuro at the MS Clinic here in town. DX 2001 with worsening r/r. I am now spms. I've been on Betaseron, did Novatrone treatments , and now on Copaxone.

    Leave a comment:


  • nancy77
    replied
    Greetings from Vancouver

    I am afraid the MS Society in BC is not too amenable (or the docs) to ccsvi.

    When I sent in my application to ubc, I was told they are not doing any studies till the summer....so call back then.....

    Originally posted by littlebelle View Post
    I am sure there are many out there. I have met a few. So Where in Canada are you from? If you do not want to say that is fine. Just pop in and say Hello.


    I think since our insurance issues and medical supplies issues are different from our US friends we should have a place to discuss how our system works. What trials we have going etc.

    Looking forward to meeting you all

    I live in Barrie Ontario 100 KM from Toronto.

    Leave a comment:


  • JAMIE204
    replied
    I've been living with MS since I was 21(when I was initially diagnosed), I'm now 30 and have been fortunate to have had only 2 relapses (one about 4 months ago and 1 when I was diagnosed) now I'm in the process of applying for Pharmacare and going on Rebif hopefully soon. But both times I went for MRI scans I waited 2 months each time. Does anyone know how Pharmacare works here in MB??? I'm a little concerned with the cost etc and how that works?? I'm not too 'swift' when it comes to this stuff lol

    Leave a comment:


  • RedRose2
    replied
    I am in rural Manitoba - I am on Avonex and in my discussions with my pharmacist - the meds are on regulated temperatures, and seem to be well-monitored in delivery from the med supplier to the pharmacy.
    As far as MRIs in Manitoba - there are wait times, yes - however, I do believe that they are prioritized according to presenting symptoms and rate of onset. In my diagnostic history, my first MRI was in two months - then when still "fishing" for more info when I had mild symptoms, I then waited for 6 months - after my 1st year follow-up with the neuro. An acquaintance I know had an MRI within 1 day after he presented with rapid onset of significant symptoms - he had a confirmed MS diagnosis within days (they thought they were looking for a brain tumour). So, while I would have liked to have my tests sooner, in the big scheme of things, it may have been more appropriate use of resources. In my other experiences; when there were urgent things going on and I needed medical attention and tests quickly - I got them. Pros and Cons in both US and Canadian health care.

    Leave a comment:


  • spartacus
    replied
    Originally posted by bubbadan View Post
    If you think that its any easier in the US you are sadly mistaken. I've had M.S. for 18 years now and it took numerous testing to finally come down with a diagnosis.
    As a US citizen, I am more familiar with Canada's healthcare system than many Canadians in certain areas, as I have worked in a very specialized pharmaceutical area there and was responsible for all of Canada.

    Have the MRI wait lists around Toronto improved any? What is the average wait time for an MRI where you are at in Canada?

    When you receive injectible meds, are they properly packaged to maintain correct temperature during shipment?

    -- This can be a huge issue for certain meds especially given the harsh winters there. Until a few years ago Canada had no regulation mandating drugs be shipped at correct temps. There is now a HC/SC Guideline for it -- I am just looking to see if it has been fully implemented yet there.

    I'll be checking in from time to time. I love Canadians.

    A bientot.

    Leave a comment:


  • kaitlynsi
    replied
    Fellow Canadian

    Hi littlebelle,

    I am originally from Bradford, Ontario. My sister lives in Barrie, parents in Wasaga. I am now in Richmond, B.C. which is just outside of Vancouver. Our medical system is very different.
    I heard the Doctor situation is very difficult in Barrie because of the shortage of Physicians.
    Have you heard about the new treatment (CCSVI).
    Anyway, hope to hear back from you.

    Leave a comment:

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