Friday, 25 July 2014

The Gilenya-process

The wheels have started turning already.  Thanks to a very organized and efficient nurse, all of my preliminary tests have been scheduled for right when we get back from holiday, and all on the SAME day!  That is an amazing feat in itself.

August 14th begins my new Gilenya journey.

And before the end of August I'll have my day-long hospital stay for first-dose monitoring.

Despite my anxiousness over starting a drug that has scarier potential side effects, I am listening to my Neurologist, believing the research I have done, and feel comfortable with this decision.  I need to be on this medication in order to slow down the process of permanent disability.

And I am positively giddy over losing the daily injections!

Wednesday, 23 July 2014

A decision

I have been humming and hawing for a long time now.  A really long time.

I was wondering what was going to have to happen in order for me to make this drug decision.

I think it happened today.

(and it has nothing to do with MS, or health, or anything, really).

My car unexpectedly needed new tires and new brakes.  I needed to hand over a lot of money.  I was emotional and stressed.  And when it came time to pay, and the job hadn't been done to completion (or to my satisfaction), I called them out on it.  It was nice to feel in control, and to argue for something I felt wasn't done right.

And for whatever reason, this event made something click.  I could stick up for myself, and coherently explain what needed to be done.

When I got home, I emailed the MS nurse and told her I had made a decision.  I am going to go with Gilenya.

Firstly - it will be covered by Pharmacare.  Secondly - it's been almost 2 months, and I still haven't heard a peep about whether Lemtrada will be covered by my extended health plan. 

Too slow.  I need to move on. 

Deep breaths.  I made a decision!  Now I need to arrange for my preliminary tests on my heart and eyes. 

But first - almost time to head to the place I spent my summers growing up.  Some time on Skaha Lake.  My very favourite happy place.

Tuesday, 8 July 2014


News - Pharmacare (and my insurance company for the rest) will cover the cost of Gilenya for me. 

It is double the cost of my current MS medication, about $40,000 a year.

(This is not to be confused with the medication Lemtrada - the super expensive treatment I mentioned in my last post - which I am still waiting to hear about).

One down - one to go. 

It's a positive step, simply by getting an answer, but now the decision I have to make looms closer.

A skill I definitely do not have - making a decision and sticking with it.

Monday, 7 July 2014

What's new?

Well, the crippling vertigo and dizziness lasted 6 days - I am so glad to see it go.

It was replaced with another round of food poisoning.  Equally unsettling; a thousand times more disgusting.

Running on about 80%, I thought it was time for some updates.

Jack is almost seven.  I cannot believe it.  He has suddenly merged into this pre-pre-teen version of his former self.  He can sing along to all the songs on the radio, shushes me when I am "too embarrassing," knows technology better than I do - and has the teenage attitude to go with it. 

He's a fun-loving little man who is hard to keep up with!

Pogo stick mania!

I also had a fun photo shoot with the MS Society for their Canada day campaign - ACTIONonMS.  It was so rewarding to be part of the series of photos sharing information about MS in Canada.


And finally - a letter from my extended health insurance.  I opened it with such mixed emotions.  If they will cover the cost of Lemtrada - do I go for it?  Or do I play it slightly safer, as I usually do?  A huge decision.

But one saved for another day, as it happens.  The letter seemed to be more of an insurance-stall than anything.  "They have not received all the information they require from my doctor, but cannot contact the doctor themselves.... blah, blah."

What further information do they urgently need to know?  Wait for it..."What is my diagnosis."

(They know that already).

Really?  5 weeks for that?  Pfft.

So, what's new with you?

Friday, 27 June 2014

MS fast fact - Vertigo

It's been a very MS-y week.

With incredible vertigo now being added to my list of symptoms.


Dizziness is a common symptom of MS.  Personally, I feel off balance and lightheaded pretty much every day.  Less often, people with MS can have the sensation that they or their surroundings are spinning  - a condition known as vertigo. These symptoms are due to lesions in the areas of the brain that coordinate and maintain equilibrium.


I hardy made it out of bed this morning, and ended up crumpled in a heap on the bathroom floor.  I've been in bed ever since, trying not to move my head at all.

Even with a 2 hour nap, it still feels like I am permanently spinning.  Barf...

My giant baking bowl has been holding guard just in case I need to use it.

I am not sure if anything can be done - I've heard some people with MS can take a short course of steroids or anti-motion sickness medication.  I put in a call to the nurse anyway.

I guess this means I have no choice but to sleep away the weekend... right boys?

Wednesday, 25 June 2014

When style takes a backseat...

I've written about the effects of heat on MS before.  My post from last summer explains all the sweaty details here.

Tis the season again.  It's not actually that hot outside, but townhouse living makes the heat stand still.  It sinks right in.  I have that unwanted sticky-glisten all day long.

The usual tricks aren't working.  The blinds are closed during the hottest times, the windows are cracked and the rooftop deck door is open and screened to create a breeze.  The clunky old portable AC is about to make an appearance too.

This year, I have thrown caution (and all fashion sense) to the wind. 

I bought a cooling neck tie.

Yes, you read that correctly.  It looks sort of like a boy scout neck tie, but with cooling gel beads inside.  There actually is a market for these things, as you can see:

This one is from REI in the US (which is like our MEC) but there are lots of specialty online retailers for these babies, as well as all sorts of even-more-fashionable cooling gear.

I've yet to decide if this will be an at-home accessory, or if I'll venture out in it...

But, ahhh - bliss!

Tuesday, 24 June 2014

MS fast fact - Lhermitte's sign

This is the name given to an electric shock-like sensation that occurs when flexing or moving the neck. This sensation radiates down the spine, sometimes into the trunk, legs, and arms.

At some point, about one third of individuals with MS will experience Lhermitte’s sign.  Lhermitte’s sign was named after Jacques Jean Lhermitte, the French neurologist who first characterized it.

It is a classic symptom of cervical spinal cord lesions.


I felt this for the first time about a month ago, when I flexed my neck downwards.  Then again this past weekend during a marathon fight with the Rainbow Loom.  (Age 7 and up?  Pfftt!  I swear it's the most complicated blasted piece of plastic I've ever encountered).

It does feel like an electric shock, but it also feels like intense heat.  The heat spread right down my back, like I was on fire.  I was grabbing at my shirt, asking everyone to check because something must be on me

Nope.  Just that darn cervical spinal cord.

(And... the Rainbow Looming is coming along a little better now)