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!

Friday, November 5, 2010

Stress & MS

I feel great most of the time, just when I get a little stressed I get the numbness back, like now.  My work raised about $13,000+ for my treatment and I am trying to coordinate with the GM toget my money - I want to pay down the credit card before the big bills come in.  Oh well, I was supposed to get it today, but he is not returning my messages :(

Sunday, October 24, 2010

My MS treatment - yes I'm back!!

Hello all!  I am back from Cabo San Lucas, and am THRILLED with the results!  I won’t bore you with the incredible calibre of care received by everyone at the AmeriMed hospital, only to say I would not hesitate to return for any operation!   Sorry if I run on a little long, but I am so excited. 

Saturday night
I arrived to the hotel on Sat Oct 16/10 at around 5PM and was met by the two coordinators from the hospital where we dealt with all the paperwork and what my schedule would be.  To expedite, they recommended I go that evening to get my MRI, then have Sunday free to eat & drink anything (as Andreas the awesome hospital coordinator told me to do), and go to the hospital Monday morning at 8AM for a plethora of tests and the procedure.

We ensured the luggage was in our room, then went to the hospital, where I was led out of the main clinic in a wheelchair by the MRI technician, across the parking lot (feeling weird), behind the hospital to a portable ATCO type trailer, placed on to a wobbly lift and elevated to the machine.  Felt weird, but when you realize that in Mexico, they place value on the care and quality of the equipment, and not so much on what the building looks like you understand.  So after the initial MRI they needed to inject contrast dye in my veins, and this is where it got interesting. 

They could not find a vein to inject the dye into.   The guy tried twice in my left arm,  then my right arm.  He had a senior nurse come out to help and she finally found a vein in my left hand and they injected the dye!!  I finally got  back to the hotel at 10:49 PM, bruised and starving as we hadn’t eaten since that morning in Vancouver.

Monday morning, 8AM at the hospital – met with a team of doctors (Neurologists’ etc)
for my Neuro exam (including standing, walking and balance, general memory & and coordination) Had a hearing test, left ear damaged, only about 25% hearing left in left ear. Doppler scan – this was disappointing, as it showed no CCSVI, however, the tech recommended I receive the procedure anyway as there was something that did not seem right.  - Blood work (my cholesterol level was good they said, yeah for small things). The finally around 1-1:30 off for my procedure. Nice and easy, the surgeon (my newest hero Dr. Rafael Moguel) had Supertramp playing which was pretty awesome and relaxing.  Then Victor ( the anaesthesiologist sat beside me and stroked my head and held my hand telling me, this will only hurt for a minute, are you okay (since when do you get that type of care in BC?).   The only pain I felt was when they were ballooning my jugular veins.  There was definite Stenosis/Occlusion in both jugulars, leaving me with  approximately 30-40% proper circulation.  (Stenosis is more like a “kink” in the vein; it is the narrowing of a blood vessel or any other opening inside the body. This narrowing can cause an obstruction or blockage to occur).   He ballooned the left side twice, and the right side once.

Before I knew it, all was done they bandaged me up and wheeled me back to recovery.  After resting for about 30 minutes, they brought me a burger (that I ordered), and a huge plate of fresh fruit (one of the reasons Mexico is so great).    After eating, I got changed and upon standing noticed the first improvement – my left ear, the hearing was almost perfect, and I had balance (no wobbling!).  Back to the hotel by 5PM, and asleep by 6:30! I spent the next few days resting, sleeping & eating.  I walked a fair bit, but definitely need some physio and exercise to rebuild my strength. 
Immediate Improvements –
  • Hearing
  • Balanced standing
  • My right foot lifts, does not drag – ergo no tripping!
  • Vision, ever so slightly better – need to get a new prescription!
  • Fatigue/Energy level, no longer exhausted by 8PM
  • Heat tolerance – no longer always hot! I don’t need a fan on me always
  • Arms  I can lift them past my waist now and reach for the sky!  (In Surrey, a Dr assumed it was bursitis, if it was, no more!) 
  • No cog-fog – this was immediate!
  • My right hand, the numbness that has plagued me for years is almost gone, I can cut my food if needed and write better than a child
  • No longer choke on food!
Went for follow-up exam, the ear doctor said he wished all patients were like me, left ear improved by more than 15 decibels.    Walking speed was better by 8-10 seconds or so, and I closed my eyes while standing and didn’t “list” to one side or fall.
Some of these  things will continue to improve with time and physical work on my part – which I can now do as I am no longer always exhausted!!  I am also starting a “heavy metal cleanse” – meant to reduce the levels my body naturally (unnaturally?) stores.

All in all, the best money  I ever spent!  I was mistaken - I will need to pay a nominal charge plus my air & hotel for follow-up care.. still the best reason to spend 15grand.... I mean this was “risky and Dangerous”, so it is doubtful an appropriate doctor would touch  this (i.e. a Vascular doctor).

It is a real shame this can’t be done locally though, as this just proves, while not a cure for MS it is definitely worth it.  In my opinion, this is truly a job better suited to the “plumber” (vascular)  versus the “electrician” (neurologist).  Cabo  - just Cabo - is expecting 60+ Canadians in January 2011!!

Thursday, October 14, 2010


Blaine Calkins
Calkins.B@parl.gc.ca  AB Conservative

Diane Ablonczy
Ablonczy.D@parl.gc.ca  AB Conservative

Rick Casson
Casson.R@parl.gc.ca  AB Conservative

Rob Anders
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Rona Ambrose
Ambrose.R@parl.gc.ca   AB Conservative

Stephen Harper
Harper.S@parl.gc.ca  AB Conservative

Leon Benoit
Benoit.L@parl.gc.ca  AB Conservative

Linda Duncan
Duncan.L@parl.gc.ca  AB NDP

Peter Goldring
Goldring.P@parl.gc.ca  AB Conservative

Laurie Hawn
Hawn.L@parl.gc.ca  AB Conservative

Brian Jean
Jean.B@parl.gc.ca  AB Conservative

Jason Kenney
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Mike Lake
Lake.M@parl.gc.ca  AB Conservative

Ted Menzies
Menzies.T@parl.gc.ca  AB Conservative

Rob Merrifield
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Deepak Obhrai
Obhrai.D@parl.gc.ca  AB Conservative

Lavar Payne
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Jim Prentice
Prentice.J@parl.gc.ca  AB Conservative

James Rajotte
Rajotte.J@parl.gc.ca   AB Conservative

Brent Rathgeber
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Blake Richards
Richards.B@parl.gc.ca  AB Conservative

Lee Richardson
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Devinder Shory
Shory.D@parl.gc.ca  AB Conservative

Kevin Sorenson
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Brian Storseth
Storseth.B@parl.gc.ca  AB Conservative

Tim Uppal
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Chris Warkentin
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Alex Atamanenko
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Don Davies
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Dona Cadman
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Ed Fast
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Fin Donnelly
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Jean Crowder
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Jim Abbott
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John Cummins
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John Duncan
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Libby Davies
Davies.L@parl.gc.ca  BC NDP

Nathan Cullen
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Nina Grewal
Grewal.N@parl.gc.ca   BC Conservative

Peter Julian
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Randy Kamp
Kamp.R@parl.gc.ca  BC Conservative

Ron Cannan
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Russ Hebert
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Stockwell Day
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Sukh Dhaliwal
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Ujjal Dosanjh
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Hedy Fry
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Richard M. Harris
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Jay Hill
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Gary Lunn
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James Lunney
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Keith Martin
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Colin Mayes
Mayes.C@parl.gc.ca  BC Conservative

Cathy Mcleod
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James Moore
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Joyce Murray
Murray.J@parl.gc.ca  BC Liberal

Denise Savoie
Savoie.D@parl.gc.ca  BC NDP

Andrew Saxton
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Bill Siksay
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Chuck Strahl
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Alice Wong
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Terry Lake
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Gordon Campbell
premier@gov.bc.ca  BC Liberal

Kevin Falcon
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Colin Hansen
colin.hansen.mla@leg.bc.ca  BC Liberal

Carole James
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Bruce Ralston
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Jenny Kwan
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Mike Allen
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Niki Ashton
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Rod Bruinooge
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James Bezan
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Steven Fletcher
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Shelly Glover
Glover.S@parl.gc.ca  MB Conservative

Candice Hoeppner
Hoeppner.C@parl.gc.ca  MB Conservative

Jim Maloway
Maloway.J@parl.gc.ca  MB NDP

Pat Martin
Martin.Pat@parl.gc.ca  MB NDP

Anita Neville
Neville.A@parl.gc.ca  MB Liberal

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Smith.J@parl.gc.ca  MB Conservative

Vic Toews
Toews.V@parl.gc.ca  MB Conservative

Merv Tweed
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Dennis Bevington
Bevington.D@parl.gc.ca  NWT NDP

Leona Aglukkaq
Aglukkaq.L@parl.gc.ca ; NUN Conservative

Carol Hughes
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Charlie Angus
Angus.C@parl.gc.ca  ON NDP

Cheryl Gallant
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Dean Allison
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Harold Albrecht
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Jack Layton
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Kirsty Duncan
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Gérard Asselin
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Gilles Duceppe
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Guy André
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Luc Malo
Malo.L@parl.gc.ca; PQ Bloc

Josée Beaudin
Beaudin.J@parl.gc.ca PQ Bloc
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BerniM@parl.gc.ca   PQ Conservative

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Rob Clark
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Randy Hoback
 Hoback.R@parl.gc.ca SK Conservative

Ed Komarnicki
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Tom Lukiwski 
 Lukiwski.T@parl.gc.ca SK Conservative

Gerry Ritz
 Ritz.G@parl.gc.ca SK Conservative

Andrew Scheer
 Scheer.A@parl.gc.ca SK Conservative

Brad Trost
 Trost.B@parl.gc.ca SK Conservative

Maurice Vellacott
 Vellacott.M@parl.gc.ca SK Conservative

Lynne Yelich
 Yelich.L@parl.gc.ca SK Conservative

Larry Bagnell
 Bagnell.L@parl.gc.ca YK Liberal

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: 

Sunday, September 26, 2010

Jody Paterson: Why the fierce attacks on MS therapy?

Jody Paterson: Why the fierce attacks on MS therapy?

Excellent article, questions that have been asked by many, but why has no one ANSWERED?  We keep getting fed this crap that there is no science behind it, when one of our biggest supporters is herself a scientist, Dr. Kirsty Duncan, and a strong supporter of this treatment.   

I mean, we aren't saying it is a cure, but it is a TREATMENT that is a damn sight better than any of the poison that is being forced upon us by neuros and pig pharma.  And it has also given relief from the constant pain we live with.  Shouldn't they be concerned about helping us with that at least?

Thursday, September 16, 2010



A new imaging studies suggests that Iron deposits deep in the brain may cause multiple sclerosis as this article says.

I don't know how true this is, or if the events I mention are coincidental.

a) I used to get perms all the time, and cotton was placed around the hairliine to absorb the excess solution. On me, the cotton always turned a bright purple/red color, and the hairdresser told me it was iron - coincidence?

b) I could never wear watches as I had a severe reaction to the metal, contact dermatitis my Dr called it (even the button on blue jeans gave me a rash.

c) wind-up watches did not work on me, they ran fast or too slow, and even stopped dead. Chlorella

Could all this be tied in to excess iron?
I have suggestions from some of my FB friends (Diana and Tina) that after "Liberation" AKA angioplasty, it is especially important to "GET THE IRON OUT", so taking the following daily is important:
It's just one of each capsule, per day with a meal... Iron acts like little Pac Men, whereas it destroys tissue, so please try to minimize this from happening, as much as you can, by taking your Milk Thistle.  Please wait until after your procedure to take this, as your blood flow inhibits proper elimination of the iron, therefore, it can be trapped in areas that chelation can't assist, until proper blood flow is restored
  • Green tea extract caps. (found at health food stores) 
  • Milk Thistle caps. so the iron doesn't get stopped in your body filters (kidneys and liver), where it can do damage.
  • It's just one of each capsule, per day with a meal...
  • Chlorella
  • Lions Mane Mushroom caps - help with regeneration