i Knew It!

Steups...they only did a cervical (my neck) MRI - they didn't do my spine...GRRRRR!!!!i knew it was just too good to be true.  STEUPS!!!!!  i don't know how they are going to handle the fact that it wasn't done yet.  and it was actually the one i was looking forward to the most, since i know that i have scarring on my spine and was really curious to see what might be going on there since last year.

Anyhoo, so the neck one was good...it shows no sign of disease progression - that is great news! 

so... that means, the brain is clear, the neck is clear and uncharacerstically of me, i'm thinking that the spine is clear too.

MRI Time Again

So i had a 2fer last week Friday...had to go in for infusion #14 (time waits on no-one; can't believe it's been so long already) and did my neck & spine MRI on the same day.  The MRI was scheduled first, but they sent me in the infusion room for the nurses to set up my IV "so that i wouldn't have to be stuck twice" - LOL!!!  (when they do the MRI, they inject me with a dye so that the lesions/scarring would show up more clearly so the thought is that they would use the same IV site that the nurses set up for the infusion.)  As  they say  down here in the south, "Bless their hearts"...they really mean well, but on the day that I'm only stuck twice I'm extatic! As it turns out, i was stuck twice to set up the IV - such good times.

Anyhoo, so i was about to go into the tunnel for the MRI and i asked the radiologist if i should settle in for about an hour and she said, "no...it'll only take about 15 mins".  15 mins????!!!!   She couldn't be serious.  For real????  I'd adjusted my medication time so that i would fall asleep right about the time i was in there...i was skeptical and even wondered if she knew which areas i needed to have done but i didn't say anything (i should have - if they didn't get all areas i don't think that Aetna will pay for another), i mean i was scheduled for a neck and spine MRI so she must know what she was doing.  I couldn't believe it - about 15-20 mins later i was out!  i think that it was the best MRI i'd ever had done - even though i think that i dint insert the ear plugs properly because it was extremely loud in there (louder than normal, but then again, this wasn't a normal MRI experience)!

No results yet; i thought that i would have been able toget them soon after, but i couldn't.  I called this morning and left a message so hopefully someone will call me back soon with the results - fingers/toes/legs/eyes all crossed that there's been no progression.

Encouraging/Good/Great News

Went to the doctor today and the results of the MRI were good.

• No PML
• No activity of the existing lesions on my brain
• No additional lesions

In other words, there has been no progression of the disease within the past 6 months and maybe, just maybe, the Tysabri is doing its job.

MRI Tomorrow Morning

Well...we are here.  I am scheduled for my 1st MRI (happy times - NOT) since being on Tysabri tomorrow morning.  Luckily i didn't have to go thru the last rigamaroll (shenanigans/bullshit) like the last time because this time I'm having it done in house at the MS Center.  The other good news is that it's only going to be of my brain so it won't last 2.5 hours - i really can think of a million other things i'd rather do on a Saturday morning!

This is how the MS Center tests to see if I'm at risk for the brain infection and maybe I'll also see if Tysabri is helping at all (diminished/decreased/no additional lesions on my brain)...not sure if it's too soon to see all that - it's only been 7 months.  I have a follow up with my neuro next Tuesday so we'll see.

The Experience

So, have u ever laid(n?) on a flat, hard surface completely still (head immobilized by a hannibal type mask) in a cold room (thank goodness they give u a warmed blanket) for 2 hours????  That's what i did on Saturday!

What an experience...The good news is that i must have fallen asleep because when i came out of "the tunnel", i asked the technician how long i was in there and she said 2 hrs...there was no way i would guessed 2 hours...so i must been asleep longer than i thought.  I knew that i fell asleep but it must have been for a much longer time period than i thought.  Luckily for me, the noisier things get, the more relaxed i get so the more that i can sleep.  I mentioned before that the machine is very noisy - they actually give u ear plugs - so it was singing a lullaby for me each time.

At some point my head started hurting and i would shift it ever so slightly but it got to a point where it was hurting so much it was actually burning!  I guess they didn't put enuf padding behind it...i actually remember thinking, "shit!  I should never have shaved my head...if i had hair, at least that would have given me some padding back there".  Luckily, they had to inject me with a dye before taking more pictures so she was able to put more padding behind it to make it more comfortable.

MRIs are not physically painful, except when they inject the dye...but i absolutely hate to have to do them because they really can be mentally EXHAUSTING!

Really????

Being sick is a helluva ting...My MRIs are scheduled for Sat afternoon.  I'm assuming that the entire process should take about 3 hours - UGH!!!  i can think of lots of better ways to spend 3 hours..at any rate...

The hospital called me to pre-register, so i'm talking to the chick and she's going down her list of questions.  Here is an snip of the conversation:

Chick: What's ur last name

Me: Samuel-O'Brien (1 thing people up here just DON'T get is the concept of a hyphenated last name...it's something that i will NEVER understand and it pisses me off to no end, but it's something i have to deal with EVERY *^%* time i'm asked my name AND of course, everyone thinks i'm married)

Chick: O'Brien?

Me: No...Samuel-O'Brien; it's hyphenated.  (If i'm in a good mood, i will say that it's hyphenated the 1st time i'm asked and by this time (EVERY TIME), i have attitude)

Chick: Is that an adoptive name, a legal name what?

Me: It's MY NAME!!!

WTF?!?!?  Was she really serious?  Was she kidding me???  I think that by the time i answered that question, she realized that I was pissed off and said that it was just an additional question that came up after she put in my name...I'm sorry, i really didn't care at that point, i was just insulted that she had to ask that question afterward.  What kinda stupid ass question is that?????

Anyhoo, at the end of the call she told me that someone else SHOULD call me to tell me IF the insurance covers the procedures and how much my deductible and co-pays are.  I called them back this morning to find out if that has been done yet and the chick said, "they'll call u and let u know."  I am yet to get a phone call.

I have no idea what my out of pocket expense is going to be...I'm taking bets on how much it will be and if i'll know PRIOR to Saturday when I'm at the registration desk.