Monday, August 22, 2011

August 6 - August 23, 2011 - Looking forward, looking back...

Any kind of illness blows.  Let's just get that out there. 

I remember when I was really, really sick with a horrible flu in December 2010.  I lay on the couch for three weeks wearing what can only be called muumuus and lamented the state of my existence.  I prayed for time to move quickly so that I would be back to my old self again.  And when the flu was finally over, I ran around the city like a bat out of hell.  I had so much to make up for!

That was over a period of three weeks.  Now I'm staring a lifetime of that mentality in the face and it's knocking me off my block.

The attack itself hasn't been that bad.  I have some cobweb-looking floaters in my vision and my peripheral vision is a tiny, tiny bit blurry.  I still have hypersensitive fingers on my right hand and a stiff(ish) pinky finger on that hand, plus a bit of decreased sensation up my right arm.  I've had some fatigue and some L'Hermitte's sign (mostly a buzzing in my hands when I lower my neck).  That's about it.   I think I'm on my way out of this attack because the numb/tingly stuff is slowly but surely improving.  It bothers me a bit that I developed the optic stuff seven weeks after the numbness hit me but I really don't think that was a new attack.  I think it was just more symptoms of the same one.

What's baking my noodle right now is thinking about the future and trying to figure out what is happening to me.  I know that MS is a progressive, chronic disease but I also know that I started Copaxone only 19 days after my CIS diagnosis so I moved as quickly as I could (even my neuro team was surprised at how quickly I was able to start the meds).   I  know that there are so-called "benign" cases but I also know that everybody thinks that their case is going to be benign. 

I really want to be positive and chipper but I just wish I knew SOMETHING definite!

I can see the old-hat MSers out there reading this with a knowing smile on their faces.   Trust me, I'd let you guys pat me on the head if you could.  I guess I have to expect the unexpected and figure out what kind of course I have by considering past symptoms.  It's just that it's very hard to look to the future if the only way to learn about my condition is to keep looking back.

Copaxone is kicking my ass a bit right now too.  It started really well - I tolerated it with no problems and the injection-site reactions really weren't bad.  Last week, however, every single site looked and felt like a huge bee sting.  Every welt took about 5-6 days to go away - just in time for injecting into that site area again (yay!).   If I had a nickel for every time I called Shared Solutions I would be well on my way to financial freedom. 

Finally I decided to chuck the autoinjector and do the injections manually.  What a difference!  They still hurt for a few days but not nearly as much.  It's tolerable now without any pain meds.  If any of you are struggling with the Copaxone injections here is my injection protocol:

1.   Make sure your syringe is room temperature. 
2.   Apply heat to the area for about 3-5 minutes before you inject.
3.   Pinch up a good amount of fat.
4.   Inject REALLY SLOWLY.  This is the most important part for me. 
5.   As you push the plunger, release the pinch of fat gradually.
6.   Make sure you apply pressure to the puncture site for about 1-2 minutes.
7.   Ice the area for about 5 minutes after the injection.

Don't get me wrong - the injections still suck and I have a bee sting reaction for a couple of days afterward.  They are just much less sucky now.

If anyone else is struggling with the same things post a comment.  We're in this together.  Until next time...

Saturday, August 6, 2011

Off to a Flying Start - July 5 - August 6, 2011

On July 5, 2011, after I received my diagnosis of Clinically Isolated Syndrome, I went home with my family and just sat in my parents' family room in a state of shock.  This couldn't possibly be happening to me, I thought.  I'm brown-skinned (mixed race) and I've never had a neurological incident to the best of my knowledge.  I thought this had to be some kind of mistake.  Deep down, though, I knew that this was going to be my life starting that day.  Even though my diagnosis was only CIS and not MS, I knew that it was going to happen.  I still feel that way as I'm writing this entry (August 6, 2011).

I have to credit my neuro team for giving me the facts about disease-modifying treatments (DMTs) quickly.  They wanted me to start on a DMT quickly due to my high risk of conversion and the fact that I had presented with pretty mild symptoms (mostly sensory with no disability).  I was sent home with a package of informational brochures.  After a week, I decided to go with Copaxone - and to start treatment as soon as humanly possible.

I chose Copaxone mostly because I have had trouble with my liver in the past.  I didn't want to subject it to anything more if I didn't have to.  I wasn't worried about the daily injections (actually, doing it every day has helped me get into a routine) and I wanted as few side effects as possible.  The needle is teeny-tiny and the auto-injector thingy makes it super easy to administer.

The first three months of Copaxone are being covered by my private insurance.  My application to the Trillium Drug Plan and the Copaxone Assistance Program are still pending.  I don't anticipate a problem though.

Copaxone is going great for me.  I started on July 24 and I've only had one troubling side effect - about an hour of deep chills about four hours post-injection on my eighth day of therapy.  That and one hard lump under the skin on my right thigh after injecting there for the first time.

I am SO GRATEFUL that my sensory symptoms were serious enough for me to pay attention but not severe enough to slow down my daily activities.  I think I've been given the gift of a real warning and I praise God for that.  My attack is now going on two months and I'm still in it.  The symptoms are ever so slowly getting better but my optic nerve was slightly affected seven weeks after onset. (Those symptoms are pretty much gone now).  All in all, I know how much worse this could have been.

My next MRI is October 14 and my evoked potential test is October 21.  I'm praying for stability if not improvement.  Funny how life changes in a matter of weeks.  I'll check back in soon.

Monday, July 25, 2011

How it all began - June 12 - July 5, 2011

Welcome to my blog.  

I'm a 33 year-old successful lawyer practicing in Toronto, Canada.  I am a strong Christian and love God more than anything.  I have an amazing husband of four years (no kids yet) and I am blessed to be part of the most wonderful family anyone could ask for.  My mother, father, brother, sister-in-law and I are disgustingly close.  We're like one of those annoying TV families most of the time.  I have great friends which I now know I took for granted far too many times. 

I didn't know how much I would need my family, my friends and my faith until the morning of June 12, 2011.

June 11 ended like any other day.  My husband and I enjoyed a wonderful evening with a friend and his wife at our place.  We worked hard that day to spruce up the house.  I slaved away in the kitchen and we played PS3 games until the wee hours of the night.  I went to bed happy as a clam.

I woke up on June 12 with a very slight tingling in my right index finger.  I chalked it up to using too many cleaning solutions the day before.  I just kept dousing it in cold water.   Nothing helped.

By the end of June 12, the numb/tingly feeling had crept up my right hand and wrist.  I wasn't worried at that time - just thought I might have worked myself too hard the day before.

On the morning of June 13 I woke up and completely freaked out.  My entire right arm had gone numb and tingly and the feeling had spread into my right side from shoulder to hip.  Nothing had hit my legs or my face.  I seriously thought I was having a stroke.   My husband and I hightailed it to our local emergency room, where I was told that it was "transient" and I should take two Advil and go to sleep.  That night I followed the doctor's instructions.

By June 15 the numbness had spread into my back and I had developed pain on the right side where my arm meets my torso.  I also had some pain in my right armpit.  It was uncomfortable as all hell to put my bra on.  I was pretty convinced it was a pinched nerve but I talked to my mom (a retired Registered Nurse) who told me to haul ass to Sunnybrook Health Sciences Centre (in my opinion, one of the best hospitals in the country).  I followed doctor's orders.  After four hours in the emergency room and a good neurological exam, I was told that an outpatient MRI of the brain and spinal cord were ordered for me and I was told to go home and wait for the MRI.

A couple of days later I called Sunnybrook to follow up on the MRI and found out that the resident who had requisitioned the MRI messed it up in three different places.  They said I had diet-controlled diabetes (I don't) and only ordered the MRI of the brain instead of the brain and spinal cord.  I pretty much lost it at that point.  When you have a health care system like Canada, you cherish the "free" health care but you also have to demand your treatment. 

I went to an urgent care centre at North York General Hospital on Sunday June 19 and demanded a CT Scan just so that we could get things moving.  (The fact that my firm practices medical malpractice law did quite a bit to move the doctors along, I must admit!)  The CT scan came back fine.

I went BACK to Sunnybrook's ER on June 20, dropped the medical malpractice lawyer thing, and was promptly seen by all six of the neurology residents as well as their instructor.  During that visit, I noticed that the reflexes on my right knee weren't working.  The chief neuro instructor, bless his heart, finally told me during that visit that he was "really worried" about multiple sclerosis.  I don't think I really heard him because I was so focussed on this being a pinched nerve.

I jumped on the back of the MRI department at Sunnybrook and got an MRI of the brain and spinal cord booked for July 1, 2011.  I was also able to get an appointment with a neurologist at Sunnybrook for July 5, 2011.  Looking back, things really happened at a breakneck pace in those first couple of weeks.  Someone up above was definitely looking out for me.

On July 5, 2011, with my mom and my brother in tow, I went to the MS clinic at Sunnybrook and met with two neurologists and a MS clinical nurse, who calmly told me that although I had a "pretty good" neurological examination, the MRIs showed multiple lesions in my brain (one had "lit up" indicating demyelineation) and a lesion from C2 - C4 in my spine.  I looked at the MRIs and began to cry.  I swore to the doctors that I had never, ever experienced anything like this before in my life. 

20 minutes later, I was diagnosed with Clinically Isolated Syndrome highly suggestive of MS.

And my life changed in an instant.