10 April 2012

I should start by letting people know that I am horrible about updating this blog page. Don't know why - I just get busy & it doesn't get done.  Search for me on Facebook - I am much better about posting there - especially since I can do it from my mobile phone. :)

I've been on Tysabri for about 6 months now.  Can't really say that I feel any better - or any worse.  I know many Tysabri takers say they feel 're-energized' after their dose. I sure wish that was the case for me! But - my two hours in the infusion center hooked up to the blasted IV fluids does little more than make me have to pee a heck of a lot for the remainder of the day as my body processes two hours worth of fluids.

At my last neuro appointment I was told that some issues I've been having recently (more loss of sensation, etc) are likely due to MS activity on the spine.  She looked back through my records & noticed (for the first time?) that I had some cervical lesions/activity back when I was in the diagnosis process in 2004.  Hmm... let's see - that was before I took this active of a role in what was going on with me. That was also the last time I had a cervical MRI.  So - the doc ordered one & I went to get that done yesterday. 

I hate MRI's.  Really and truly I do. However - I deal with them because... well - because there isn't much other choice - and I really have no desire to have a lumbar puncture (aka spinal tap) ever - EVER again.  The brain MRI's are what I've had frequently over the last 8 years or so - and I've figured out my own little method to deal with being in that cramped space for so long. I do a lot of deep breathing exercises when I'm in those things...
this Cervical MRI was different though. 

Do you know how hard it is to lie completely still for 45 minutes?  I mean 100% COMPLETELY still. No sudden leg/arm movements because it's all connected & will 'blur' the image of your spine / neck. Ok - so keep the arms & legs still... got it. I do my best there... now - NO swallowing.  I can't even go 20 minutes at my desk without involuntarily swallowing / clearing my throat. 

Try it. 

Swallowing is like blinking or breathing. In order to stop doing it - you have to really focus and concentrate on it.  As the saliva pools in your mouth forever - you think you just might choke on it if you can't swallow soon... but you can't because the blasted clicking of the stupid MRI machine is still going like mad.  Just when you think you can't take it any more and you're about to squeeze that panic ball they give you - the clicking finally ceases and you remain frozen - hoping that you're fears have come to an end & you can finally swallow & breath normally again & get out of that blasted machine.

*sigh*  can you tell I had a rough go of it in that machine?  What was supposed to take only 30 minutes - ended up taking almost two hours. Why? because I have involuntary leg/arm movements that caused the imaging to blur - so that section would have to be repeated.  then there was a few times when I just couldn't take it anymore and HAD to swallow / clear my throat.

Give me a brain MRI any day - they are a piece of cake... but I truly think if they want to do another cervical MRI - they are gonna have to knock me out and strap me down first... though I still don't know if that will alleviate the involuntarily swallowing...