Saturday, July 31, 2010

1st Known MS Case Was Dutch!

1400:  the earliest written record of someone with MS was Lidwina of Schiedam, the Dutch patron saint of ice skaters.

This is incredible especially because my family heritage is 100% Dutch (minus that Polish bit) and have the passion of ice-skating.  My dad ice-skates nearly every week and my Amsterdammer aunt ice skates on the frozen waters of Holland during the winter months.  I am finding this all very strange.  First MS case:  Dutch.  My heritage:  Dutch.   Lidwina’s passion:  ice-skating. My family’s passion:  ice-skating.  Wild.    

Anyhoo, read Lidwina’s story here.  It’s pretty interesting:  Lidwina of Schiedam


Don't Be the Patient

Be the friend.  Be the colleague.  Be the partner, lover, and best friend.  Be the artist.  Be the writer.  Be the surfer, swimmer, and diver.  Be the gardener.  Be the cyclist.  Be the horn player, conductor, and flutist.  Be the bingo player.  Be the deep sea fisher.  Be the cousin, sister, and daughter.  Be the baker.  Be the photographer.  Be the wine connoisseur, cheese monger, and chef.  Be the person other than just the “Multiple Sclerosis” patient.  


Tuesday, July 27, 2010

hy·po·chon·dri·a [hahy-puh-kon-dree-uh]

1.  Also, hy·po·chon·dri·a·sis  [hahy-poh-kuhn-drahy-uh-sis]  Psychiatry . an excessive preoccupation with one's health, usually focusing on some particular symptom, as cardiac or gastric problems.
2.  excessive worry or talk about one's health.

So, do I suffer from hypochondria or have I developed new symptoms? 

For example, sometimes at work I struggle to solve a problem and it’s not long before I am wiping the showers of sweat from my brow.  I find myself thinking, “oh boy, I really need to figure this out, it’s what I’m getting paid for”!  Of course I’m convinced it’s a cognitive function change and forget that the problem at hand really is difficult.  Half of the people I work with cannot not figure this out!  Besides, cognition also includes the ability to organize and plan.  If you saw my task management system you would worry that I am in need of a therapist to work through my OCD issues. 

Recently, however, my left eye has been causing me a lot of grief.  It hurts which I don’t like.  I look to the left, it hurts. I look to the right, it hurts.  I swear I’ve felt something like this before in the past, long before my diagnosis.  I assure myself that maybe my eye is tired, from strain. After all, my job requires me to look at my computer all day.  My eye also feels a bit swollen and yet when I look in the mirror, everything looks completely normal.  A lovely hazel eyeball is what I see.  No swelling, no redness.  I blink a few times, just to be sure.  No swelling, no redness.  Oh dear.  Naturally I am anxious and need to find out what’s wrong.  Immediately. 

Like anyone else in need of instant medical information, I scan the web for the MS symptoms that will perfectly describe what I’m feeling.   Optic Neuritis?  Maybe.  I’ve got pain and I’m pretty sure the color saturation is now different than my other eye.  I cover my right eye with my hand and then switch over to cover my left eye.  Yep.  Something’s off here.  I do it again.  And, once more just to be sure.  For good luck.  Yep.  The saturation is definitely off.  Everything looks flat through my left eye and normal through my right eye.  Uncontrolled eye movements?  Nope.  Double vision?  Nope.  Then I read “blindness” and definitely begin to panic.  I frantically try to picture my last scan.  I will freak out if I go blind.  Compounded with my hearing impairment, I will become the modern day Helen Keller.  I’d have to learn a new language because I don’t know Braille.  I barely learned French and Italian. Ciao.  Come va?  Bonjour.  Comment allez-vous?  I try harder to remember the MRI scan.  “Where exactly is the new lesion?” I ask myself, “is it near my freakin’ optic nerve”?  I look at Google images of brains, eye balls, and nerves.   Hundreds of them.  I remind myself, “the doc said that I would not feel any symptoms from this new lesion”.  Then why do you suppose I am having all of these symptoms?  Still, I should call him just in case I’m remembering something wrong.   Have I talked myself into getting optic neuritis?  Or, is something else wrong?  Am I simply a hypochondriac?  I am going to drive myself nuts.  Well, could ‘ya blame me? 

Stay tuned.   I’ve got doctor’s appointment tomorrow morning.


Monday, July 19, 2010


Is it just me or do women’s MS symptoms get wonky during PMS?   I notice more numbness and tingling, especially in my legs, as my body prepares for “that time of the month”.  I also get clumsier, dropping things constantly.  My mood swings all over the place and my partner has to avoid my wrecking ball by leaving the room.  Lastly, I have more nerve pain.  All of this on top of my normal PMS symptoms:  what a lucky lady I am!  The exacerbations usually simmer down once I am about two days into it.  I have decided to call this phenomenon “MS pseudo-exacerbations”.   

Naturally, I want to play doctor to find out why I get these bogus symptoms and figure this whole thing out.  Here are some of Dr. Germans’ Discoveries:

MS can make menopause come sooner.  Good grief!  So, is this good or bad? 

Aspirin may help prevent my MS pseudo-exacerbations, as proven by a 3-woman study.  That’s not a very good trial is it?  How can one make any conclusions with such little data?

The worsening of symptoms around the time of women’s cycle may be related to heat.  Just before “that time of the month”, women’s body temperatures increase and can make our MS symptoms feel worse, much like when the temperatures outside get hot.  Oh boy.  It’s close to 100 degrees today.  Double bummer for me. 

Apparently some men with MS experience monthly fluctuations in moods and irritability!  Imagine this:  four people are sitting in a bar in Phoenix, Arizona in the summer.  Two men and two women.  All have MS and are about to start their monthly cycle…

There is not a lot of information on MS for “that time of the month”.  Lots of small studies recommend more research into "the underlying mechanism of premenstrual exacerbations" so we can gain more insight.  Nothing like stating the obvious.  These studies must have been written by men.  

So, my friends, until we get more information and/or adjust MS drugs to treat men and women differently, aspirin it is.   


Saturday, July 17, 2010

New Webinar Series by Can Do MS

This past week, I attended one of six webinars hosted by Can Do MS.   I enjoyed Dr. Randy Schapiro's  "Emerging Therapies: Understanding MS Research" while relaxing in my local coffee shop and learned a lot about what it takes for a drug to get to market and how important proper clinical trials are.  Dr. Schapiro has a great perspective on Tysabri, FTY720, Vitamin D, and CCSVI therapies (amongst others) and if you'd like to watch the webinar, Can Do MS has it archived on their website.  The coolest part?  Dr. Schapiro co-authored the "Neurology" chapter of "MS: The Questions You Have, the Answers You Need" with my very own neurologist!!!  Way cool.

Click here to learn more about the webinars! 

Hope to see you there!


Sunday, July 11, 2010

Touching Video

I recently came across this very touching video of a young woman living with MS in Canada.  She wants to be tested and treated for the phenomenon called CCSVI (chronic cerebrospinal venous insufficiency).  Thanks for sharing Judy K!

Here's the video:  Kara Byrne's Video on You Tube

And, here's information on CCSVI:  Click here for more information on CCSVI


Monday, July 5, 2010

My First Week of Daily Injections

During my first week of taking daily injections of Copaxone, I have learned a lot, I have accomplished a lot, and all the while surviving it all!

Here is my list of “Top 10 Things I Learned During My First Week of Taking Daily Injections”

10.  The cats will play with the Autoject 2 needle cap once it is released so I have to be careful to dispose of it properly.  They love playing soccer.

9.  Finding the right time and place for injection is important.  For me?  The bedroom since it’s equipped with a sound machine.  I find listening to rain to be very calming.  Until the neighbors’ music is turned up – argh!  Turn it down &*$%^, I am trying to meditate!      

8.  Definitely use the daily planner provided by Shared Solutions to keep track of injection sites.  It’s only been a week and I’ve already fallen out of rotation, skipping over the thigh and straight onto the stomach.  I really like following directions and do not like falling out of order.  I want an A.  

7.  Preparing the syringe for injection is fun!  Seriously.  I like loading and locking the syringe into place, it's rather much like loading a gun.  I really hate guns and have never used one but this step sort of makes me feel like I am on a special mission, like a secret agent getting ready to fight the bad guys.  Agent 99 takes on MS! 

6.  Calm. Down.  Relax.  And.  Breathe.  I find that I get a little worked up just before injecting and need to remind myself of this mantra.  Calm.  Down.  Relax.  And.  Breathe. 

5.  The needle doesn’t hurt at all.  Sometimes I find myself asking, “Did it go in?  Is this thing working right?”  Then the burning arrives and I know everything is working just the way is supposed to. 

4.  Having my partner with me while I injection is UBER important, especially during these first few weeks.  On Friday night I jammed my gun, I mean my Autoject 2, and I panicked.  She stepped in and fixed everything for me. Sigh.  “Calm. Down. Relax. And. Breathe”, she said. 

3.  Taking pictures of where I inject is a great idea (thanks Anna!).  There is no way I will remember where I inject, no matter what I write in my daily planner.  I will try this during Week 2. 

2.  Trying not to let the injections take over your life is challenging.  I do think about it all the time, growing anxious about accidentally skipping a day.  Yikes.  Maybe an alarm will help.
1.  Save the most important thing for last, that’s the intention of this list.  The reason why I take Copaxone every day is to slow down the progression of my MS.  I do not want this disease to get any worse so here goes nothing.  Bring on the shots!   


Sunday, July 4, 2010

2 Down 14,965 to Go!

On Day Two of taking Copaxone shots, I came to the realization that I have A LOT more shots to get through in my lifetime!  Assuming I live to the ripe old age of 82, I have 14,965 shots to go.  Rather daunting isn't it?  I would like to put in my vote to fast track FDA approval of the first oral MS drug please!

Good Grief!


Journal Excerpt

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