Thursday, June 7, 2012

What a Relief!



I never thought I would hear myself say the following words and be happy about it:  "I Just Have MS!"
but that is now the case.  I found out 2 days ago that my blood test for NMO (neuromyelitis optica) came back negative...yeah!!

Until I read the email from my MS nurse clinician, I hadn't realized how stressed/anxious these tests had made me?!  Makes me wonder, if it wouldn't have been better to keep me ignorant/in the dark UNTIL the test result came back, 'cause the stress of waiting for the results kind of made my symptoms a bit worse...at least, I think so!

Oh well...I can now breathe a little easier knowing I'm not going to die! LOL ...at least from that disease.  And I can continue on, trying to help my body heal the bloody long lesion that is occupying my spinal cord.

Thursday, May 10, 2012

Neuromyelitis Optica

I saw my neurologist yesterday for the results of my spinal MRI.  Not only do I have a lesion on my spinal cord (damn!) it is a very looong lesion...from C2 to C6.  My first reaction was: damn...I have a lesion, my second reaction was oh, well, at least its only one?!  Ignorance is bliss, isn't it?  Because apparently the doctor suspects I may have a sub type of MS OR an entirely different disease (depending on which researcher you talk to)????  What the hell????  So, she starts talking about NMO (neuromyelitis optica) and how she wants me to have a blood test to determine if I have it.

Let me just say, I had never heard of NMO until that moment, and the way she was describing it (in a clinical kind of way) made me think it wasn't so bad.  She was talking about how the treatment is different for NMO than MS (NMO doesn't respond well to the disease modifying drugs) and I was thinking 'well, at least there is a treatment'.

I should have realized there was more to this NMO when the clinic nurse asks if I want to come talk in her office.  I didn't even know she HAD an office??  Still clueless, Brad and I sit down in her office where she basically tells us that NMO  can be more serious than MS...more frequent relapses, more severe, less chance of full remission, 'ya, da, ya, da, ya, da'.  Okay...still relatively clueless, because I'm thinking...sounds a lot like MS and I have NEVER recovered fully from a relapse anyways (hmm...that may have been a clue)...always have had residual effects, so this NMO doesn't sound that different. 

So, we leave the clinic to go to the lab for the blood work and then go on our way.  When we get home, I decide to look up NMO...this is where the saying 'ignorance is bliss' really has meaning.  And where my stress begins and I start to freak out...a bit...

The part that is freaking me out is this, which I have read in several abstracts:  "In general, attacks of NMO tend to be more frequent and severe than they are in MS.  The major risk to patients is severe damage to the upper spinal cord, which can lead to inability to breathe on one's ownThis may be fatal. ...what the f&*^!?!?!

I apologize for the language, but I am NOT a happy camper!  MS was bad enough...but at least you didn't die from it!  All I'm hoping for now, is that the blood test comes back negative and that I don't have NMO. 

And if I do? ... well, I'll cross that bridge when I get to it.




Saturday, April 21, 2012

Horse Chestnut for CVI (Chronic Venous Insufficiency)

While I'm waiting for the results of my spinal MRI, I thought I would look into alternative ways to treat CVI.  I haven't been tested for CVI...I had a request sent in for a Duplex Ultrasound by my GP, last September, but have not heard a peep from the hospital.  My GP did warn me that they might refuse to do the ultrasound because I wasn't showing typical signs of CVI...but I covered that in a previous post, so I'm just leaving it at that.

I do believe I have circulatory issues in my lower legs.  Although I don't have varicose veins, I do have spider veins and a definite swelling of the lower extremities by the end of the day, accompanied by very tight legs with some edema around the ankles...more so on the right leg than the left.  NOTE:  I did not have issues with swelling of my legs until about 4 years ago.  Both my massage therapist AND my acupuncturist have commented on the 'sluggishness' of blood flow in my legs.  I still suffer from cold feet...when soaking my feet in very warm water my feet (toes especially) start out white, then turn greyish, than purplish, before turning a nice rosy pink...and then they feel like they are burning...probably because I actually have blood circulating down there for a while!

So what does Horse Chestnut have to do with all this?  Well, Horse Chestnut has been used in Europe for many years to treat circulatory problems, especially CVI.  Here are two sites with some good info on it:  Horse chestnut Tips and MedlinePlus

I'm going to take 300mg Horse chestnut Seed Extract twice a day and see if that makes any difference to my legs.  If I get even a bit of relief, it will be worth it...some improvement is better than none! :)

Tuesday, April 17, 2012

MRI of the Spine...after 8 years?

I went for an MRI of my spinal cord yesterday.  Doctor wants to see if I have any lesions on my spine.  I believe she thinks that is the reason for the worsening of my symptoms related to my legs?  Got me thinking...why wouldn't the Doctor have done a spinal MRI when first diagnosed??

I'm hoping they don't find any lesions, which will really put the doctor in a tizzy because how is she going to explain away the worsening of my legs...if it isn't lesions???  That would mean possibly looking 'outside the box' of MS...like, maybe I HAVE CVI (chronic venous insufficiency)??

I go back to see the doctor in two weeks, so we shall see what the MRI shows.  In the meantime, I'm using my new "fitness walker" at school (helpful to say the least).  Not so much around my neighbourhood...but I need to ease into using it around home.

Oh, and I almost forgot!...getting my hand controls for my car installed today.  Car will be ready to pick up tomorrow!  Then I will be practicing, practicing, practicing....can't wait! :)

Tuesday, April 3, 2012

Introducing My 'Fitness Walker'!

I came home today from work to a FedEx delivery...my new rollator which I am now referring to as my fitness walker! LOL  That's what Tracy at X-L-ENT Care calls them.  A bit pricey ($624) but a very nice looking, smooth gliding piece of equipment.  I suppose if I have to use one, it may as well look as 'snazzy' as possible. 

I'm going to take my dog, Tucker, for a walk tomorrow to test it out and make sure, he doesn't mind going for a walk with it either. :)


Friday, March 23, 2012

Time Flies When You're...?

I just realized its been over a month since I last posted something.  Surprisingly, a lot of stuff has happened since then.

The most important thing is that I have returned to work! ... yeah!  Brad is driving me to work while I look into getting hand controls for the car.  This is not as simple as I imagined it would be...as most things tend to be...right?! The cost to install hand controls looks to be around $1100, but we are going to see if we can have it done across the border (US) if it is cheaper (which Brad thinks it will be).  I will also need to take a driving test to make sure I can operate the hand controls properly.  I felt better about using hand controls after the guy at the store said that given the choice between foot controls and hand controls, he always chooses hand controls.  Apparently you have a quicker reaction time...makes sense.

I'm also renting a rollator, for now, and it has been quite helpful at school.  That's the only place I use it and not in the classroom.  I'm easing into the whole 'having to use a rollator' mentality, so I only use it to get from the classroom to the office, washroom, staffroom, gym, library, music room, outside... I'm trying to find a rollator that doesn't look like a rollator...one that can be used 'off-road' (if I'm going to use one more frequently, I'm thinking it should be able to maneuver through fields, gravel...dog parks...)  I don't really WANT to use one, but the reality is, that it will help me stay mobile longer because I'll feel more inclined to walk on my own.

It's a hard pill to swallow ... having to look at the fact that the CCSVI procedure didn't help ...my legs, at least.  And it seems that those symptoms ARE worsening...and I'm not sure why?  It begs a bunch of questions I'm not willing to really look at, at the moment. :(

I'm having trouble sticking with my physio program consistently...in fact, I sheepishly, have to admit I have not done them for the past 5 days in a row!  I don't know why I have such a hard time sticking to a physical program when I have no problems sticking with my diet??

Speaking of diet...I'm looking at tweaking it...increasing the amount of vegetables...based on the Terry Wahls protocol.  If you don't know about her check out her website www.terrywahls.com.  I am looking at getting a juicer, because I can't possibly eat 9 cups of vegetables a day! ...I'd be eating ALL the time! LOL

This blog is all over the place...just needed to get these things off my chest, I guess.  I will try to be mre focussed next time. :P

Tuesday, February 14, 2012

Valentine's Day and Supportive Significant Others

Just wanted to share what an incredible husband I have, so thought since it was Valentine's Day, this would be a most appropriate day to do this.

If you've been following my blog, you will know that my ability to drive has been severely curbed which has resulted in my not being able to get to work.  I'm looking into getting hand controls for my car, but my hubby, Brad, is willing to transfer to another institution in the city I work (he works for Corrections) in order to make getting to work easier and less stressful for me. (I have a 50km commute).  Now, this may not seem like such a big deal, but I know that the institution he would have to transfer to, is at the bottom of his list of preferred places to work.   That he would be willing to do that for me, warms my heart. 

But Brad is like that.  He doesn't coddle me...far from it!...he won't let me give up!  But he is always there to give me a hand or arm when I need it, to go out of the way because I need to use a washroom...NOW!, to put up with eating/trying 'different' foods because I have a special diet, to eat at restaurants of MY choice because I have a special diet, to change social plans because I'm not feeling so 'up to it', to let me pick where we should sit at concerts, hockey games, etc. so that it's easy for me.  I could go on and on, but you get my drift.

So, I just want to say "I LOVE YOU" and thank God for sending you to me, Brad! 

HAPPY VALENTINE'S DAY

Thursday, February 9, 2012

I Miss Driving! and the Case for Assisted Mobility Devices...am I really going there?!

I'm one really frustrated MSer right now! The worsening of my symptoms that has plagued me since mid-November doesn't seem to want to abate, which means I am STILL off work!   The 'not being able to drive' would probably have caused 'stir-craziness' for some people, but thankfully I'm a bit of a homebody so it hasn't made me totally crazy...yet! LOL

The thing that is really frustrating me, is that its just my legs (stiffness & numbness) that have worsened...everything else...bladder, fatigue.. have stayed the same, meaning that for the most part I "FEEL" fine...my darn legs just won't work as well as I need them too!


I HAVE been venturing out on short (3 block) drives in my car to see how it goes, but that's about all I really want to try.  I don't have any issues with stepping on the gas (come to think of it, I never did! LOL) It's the BRAKING that causes me so much anxiety...because my feet are so numb now, I have lost pretty much all sense of where they are in relation to the brake pedal...leaving me to wonder "am I stepping on the pedal?...where on the pedal is my foot?...how much of my foot is on the pedal?"...and most recently, "is my foot going to STAY on the pedal?"

There is a solution.  I have accepted the fact that, MAYBE, getting hand controls for the car might not be a bad thing!  If you had asked me about this 6 months ago,  I would have told you there was no way in "h-e-double hockey sticks" I was going that route.  My, how a mere 6 months can change your perspective on things.  I guess that's what happens when you can't do important things...like driving, or walking properly, or working...:((

OK, so hand controls might be a good thing...I'll be able to actually drive to work...did I mention its about 50 km to my school?  There's something to be said for living in the same town you work in. :P

Unfortunately, the driving part isn't the only issue that is keeping me from getting back to work, and this issue is one that I have avoided addressing, considering, or even thinking about!  What is this issue, you ask?  Walking, simply walking!...or more specifically the struggle to walk.  Because, my darn feet are sooo numb, I have an even poorer sense of propioception.  Basically, it means my brain has difficulty knowing where my feet are in relation to the ground because of a lack of proper sensation, which results in very bad balance, which results in me working twice as hard to maintain my balance, which results in my legs getting tired quickly, which means I can't walk very far and I wobble...sometimes a lot!  And to make matters worse, my muscles in my legs are stiffer too, which means I don't walk very smoothly, which means I have to concentrate more on walking smoothly, which means my muscles get tired...you get the picture.

Ironically, I don't seem to have this difficulty with walking when I go grocery shopping.  Give me a cart and I can toodle along down the aisle for a good hour.  I start feeling my legs weakening a bit near the end, but hey...I'm motoring!  People probably wondered why I always insisted on pushing my dad's wheelchair...stability, baby!...that, and I didn't look like there was something wrong with my walking. 

And there, people, is why I have vehemently (don't you just love that word) refused (up until now) to consider an assisted mobility device AKA...the dreaded WALKER! Because (in my mind) it means I will be a visibly, slightly physically compromised (you see, I can't even say the word disabled) person and (up until now) that bothered me...well, it still bothers me...but I'm dealing with it! 

So what has prompted this change of heart?  Two things really... 
  1. I'm having teacher withdrawal (I really miss being in the classroom)  
  2. I'm not really happy with the person who has taken over my job (I don't want them messing around and changing my programs).
I need to get back to work...fast.  So, if getting a walker...actually, a ROLLATOR, will help my balance, which will help my walking, which will help ease some of the effort of walking, then that's what I have to do!

I see my neuro next week for my annual check-up, so I plan on springing my ideas about 'assisted mobility devices' on her.  That, and I need her to write me a note saying I can go back to work...pretty, please.



This one looks kinda, cool...don't you think?

Sunday, January 8, 2012

New Year, New Goals

Well,  the New Year hasn't gotten off on the best foot...especially considering that it's the foot that is causing a lot of my present problems...still too numb and spastic to drive safely, which means I can't drive to work.  Not really enjoying this extended Christmas break.  However, seeing that it is a New Year... which means a fresh start, new goals, yada, yada, yada, I've decided I need to seriously look at rehabilitation...ie physio.

Made an appointment with a local rehab/physio centre for assessment next week.  One day after I did that,  a blogger I follow ( My MS Journey) blogged about a special pilot physio program for MS patients who have undergone CCSVI in Sherbrooke, QC (?)  Unfortunately, the link was to a Radio Canada video clip in French.  But I did get the name of the director of the program - Rene McKay.  Will definitely be looking for more info about this program and will DEFINITELY be passing on this little tidbit to my own physio clinic. Surprising how that just happened to come along when I needed it to?!

So, what am I hoping to get out of physio? Well here's my wish list:
  1. maintain or improve the strength in my legs...they're not bad, but I have noticed slight weakening lately and I don't want to lose the strength if I can help it.
  2. I'd really like to improve my balance...because of numbness in both feet, I have very poor sense of propioception and I know that I waste a lot of energy trying to maintain my balance when I walk.
  3. prevent further foot drop...it's slight, but I'm peeved because I ruined my most favourite pair of Puma shoes because of scuffing! argh
  4. improve core strength...not to brag, but I've got pretty good abs...and I want to keep it that way
  5. I'd like some help with flexibility...although I've been told that stretching does not necessarily improve spasticity (its a nerve thing)
  6. I'd like to be shown a fitness program that I can do on my own, either at home (ideal) or at the gym
My husband tells me that I'm in danger of becoming like a "veal calf"... muscles that are soft, weak, flabby...I don't want to be a 'veal calf'...although they are kind of cute.  LOL