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Showing posts from 2012

What a Relief!

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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.

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 th…

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…

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 wi…

Introducing My 'Fitness Walker'!

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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. :)


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 c…

Valentine's Day and Supportive Significant Others

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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…

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

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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 …

New Year, New Goals

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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 …