About Me

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Surrey, BC, Canada
DX in '01 with MS; in Jan 02, Told it was PPMS "the good kind" whatever that means.... The progression of my MS has been a long and arduous journey, the last 5 years specifically. I went from complete independance (I drove, went to the mall, movies etc) to the point I am at now. I haven't been to a grocery store in about 3 years (I love grocery shopping), Ikea it has been about 5 years, Costco, at least 5 years - SUCKS!! My DL expired last birthday, and I didn't renew right away for two reasons - I didn't want to drive because of my MS (being responsible) and 2, I couldn't afford the renewal fee (cut my wage by $4 per hour due to the economy, which led to apathy on my part) Married since 1994 to my AMAZING husband, Dan; no kids but we have the freedom to travel - and travel we do!

Thursday, October 14, 2010

E-mail to Federal & Provincial politicians

As a PWMS (person with MS), I like thousands of my brother & sister MS’ers can no longer, in all good conscience, support the MS society ; likewise, I cannot support any Politician or Political party that supports them and their close minded attitude towards a treatment for MS that thousands of Canadians are successfully receiving outside our Country.

To the medical community (including neurologists, the MS Society and Pharmaceutical companies) - who do you think you are? Just because they hold our lives in their hands should not give them the "power" to decide treatment options for us, I mean WTF - we live in a country that is SUPPOSED to have universal healthcare, refuses us treatment, yet freely gives care to other unfortunate souls from other countries. How can they dare decide that CANADIAN CITIZENS that ARE REFUSED CARE at home, and that we must go deep in debt to receive this care elsewhere.


It seems the care is universal if you don’t have MS, blocked veins be damned!! There exists much information to constitute a re-evaluation of how we should be approaching this disease. The venous aspect has been pushed under the table for far too long.

It is time for our great government to realize that this may not be solely an autoimmune disease. There exists enough evidence to support the concept of a venous connection and until we see this pushed to the forefront we cannot in good conscience stand behind the MS society any longer.  For too many years we’ve been taking their advice and we still end up in wheelchairs. Along comes Chronic Cerebrospinal Venous Insufficiency and the society is out to disprove the link.

All we have ever asked is that you - Please help us.

I guess the Neurologists & MS Society are forgetting (ignoring) the Canadian Medical Association Policy.

Guidelines & General Principles

Code of Ethics
http://policybase.cma.ca/PolicyPDF/PD04-06.pdf (first and foremost, consider the well being of patient)

I would be more than happy to provide any and all information you require to make an informed decision regarding this most important aspect for those of us who suffer from this crippling disease. I do have the support of a doctor who will back up this idea, when asked he stated “I would do it”.

I also find it rather ironic, that a chair of a Toronto MS Society is going to Poland for her Angioplasty....I wonder who is paying for this?

We are a force now and the MS Society realizes the obstacles they have put forth, and that they are battling a losing cause. No longer are we uninformed, willing participants in the money making ventures of those people have put in place, supposedly having our best interest at heart.

It seems that MS symptoms are really driven by “plumbing” and we have been using “electricians” all along.

Thank you so very much in advance for your consideration toward this most important subject.

Respectfully yours,

Lori MacMullen
Phone number: 

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