Primary Progressive MS - Anyone out there?

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Primary Progressive MS - Anyone out there?

Postby Evelyn » Sun Nov 22, 2009 11:40 am

I have been seeing a neurologist at UBC, Vancouver BC since 2008, after many "misdiagnoses" since I began noticing something wrong in 2003. My doctor is not ready to actually diagnose me with PPMS, but seems to be leaning that way. All he has suggested so far is physiotherapy, which can be excruiating. Not knowing for sure is also taking a toll on me mentally. I am gradually becoming incapable of doing minor everyday activities, can no longer shop, do my banking, etc., as my legs become so shaky standing in a line up for anything is impossible.

I saw the W5 program last night, and am wondering if this treatment is aimed at the relapsing-remitting type of MS, or if it will work on PPMS or the Secondary type.

Anyone out there have any knowledge of this fact? I am on a 8-9 month waiting list for my 3rd MRI, which I am hopeful of getting a definite diagnosis from, when I see my doctor in July, 2010.
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Postby LR1234 » Sun Nov 22, 2009 11:58 am

Hi Evelyn,
The treatment for CCSVI is not aimed at just RRMS.

There are many SP and PPMSers that have had the treatment and it seems to have stopped progression. (It is still early days yet though)

The PPMSers and SPMSers do not recover their losses in the same way as RRMSers who seem to improve more quickly, with the progressive patients it seems to be slower positive changes which add up over time.

Check out the CCSVI board x
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Postby WoodDuck » Mon Nov 23, 2009 11:24 pm

Glad to hear this also.. my mother has had PPMS for 50 years believe it or not. (diagnosed in '74 but has had symptoms since '54). We were very excited to see the W5 show (online) but a little wary when Dr Zamboni mentioned that "not all CCSVI in PPMS patients can be treated." I still don't know what that means but if I had to guess I'd say it because the location of the stenosis might be in a dangerous area for the procedure?

Anyway, I live near UBC and my mother is a short flight away in Victoria so I've emailed Dr Rauscher to see about getting her in for the SWI test. They are one of the "collaborators" - I wish I had the link to share but it should be on the forum.

Best of luck.

P.S. We went to UBC about 8 years ago to see about an interferon trial of some kind. She was to have an MRI, some treatment and then another MRI but she didn't want the side effects or the cost and it seemed risky. I'm not sure if this is the same clinic?
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Postby Alica » Tue Nov 24, 2009 5:50 pm

Hi Evelyn.

Which MS doctor at UBC would you recommend? I hope to be accepted by Dr. Kastrukoff.

I’m sorry to hear about your ordeal. Sounds very similar to mine. :?
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