Dr.'s Visit

so i went to my neuro last week Tuesday...did a 2fer - went to see him and did my infusion one time (1 stick - woohoo!).

The disease is stable - my exam went well - nothing to report on that.  he asked me if i've figured out the correct combination of all the drugs to take, i said yes and told him that i don't want to change the pill regimen.  the things are not a bother and don't impact my life negatively in any way - got rid of all the napping, so i'm happy.

there is a blood test that he is going to perform to show if i've been exposed to the JVC virus (the one that causes PML - the brain infection); (i can never say that without laughing out loud - i think it's so damn ridiculous)!  It'll be a year since i've been on Tysabri, so they like to test at a year to see if the patient tests positive to the anti virus and then make a determination as to whether or not Tysabri really is the way to keep going.  I hadda (have to) say, that i hope that i can stay on it...i don't want to go back to a daily shot, nor do i want to start takin the new oral pill because...well it's new (that coupled with the fact that there's already been some BAD thing (i can't even pretend to remember the word he used) reported).

They'll take the blood for that test when i go for my next infusion - must remember to drink a bucket of water the day before and day of so that my blood will flow that time, so that they can get enuf to do the test!

Tysabri

I didn't want to say this out loud before but I think that the Tysabri might actually be working.  I can see a slight improvement.  Trust me, I won't be running any marathons anytime soon, but I am almost positive that there is a small improvement.  Now, I'm not sure if someone looking at me can tell if there's a difference, but I can feel it, altho...

My mother surprised OB and G last week and came back up here for Christmas and i overheard her say to G some day, "but Stacey was walking real good this morning...", a good friend came to see me for a brief 24 hr stint last week and by the end of the day that i'd picked him up at the airport, i was struggling but the next morning, he said to me, "...but A  A, where u running going?"  A few weekends ago, we went to do our Saturday ritual (get eyebrows done) and G was amazed at how well i was walking.

On all the occasions, i had been walking "normally" - well -  as normal as I can be.  It was always that in the mornings, I would struggle less than at the end of the day, but i definitely feel better and look better these days.  There may be a light at the end of this tunnel afterall.

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.

#3

I'm a PRO at these infusions now.  #3 was last week Friday - everything went well; no worries, stress nothing.  I fell asleep while it was doing its thing and I even went out later that nite!  Of course, the head nurse (i'm a problem child, so she is the only one who takes care of me) still hasn't figured my veins out...but this time i only had to get stuck twice as opposed to 3x the last time.  It's amazing the places that they go into as well - i woulda never thought that i would actually entertain using the bony side of my wrist!

I still can't say if the medication is working or even doing anything...but the good news is that nothing is getting worse and nothing new is happening.  I also confirmed without a doubt on this last visit that i am anaemic.  I would love to know how that happened all of a sudden and i can't blame the Tysabri because my iron started getting low before i started on it.  I haven't experienced any of the classic reasons for iron deficiency - major blood loss being the most significant - and there really isn't any explanation for it, but hey!  i'm dealing with it and it's not such a major issue to lose any sleep over.

Infusion #1

it went well!  No horrible side effects, no horror stories - NOTHING!  whew!!  Actually, the infusion itself was supposed to take an hour...I, of course, was done in half hour but they assured me that wasn't anything to worry about.  They still kept me for observation afterward and I was a little woozy at the end but it was because i had taken 2 Tylenol PM Xtra Strenght before the procedure.

so I've mentioned before that i donate blood regularly and I've also mentioned how much I hate needles.  Everytime blood is taken from me, for whatever reason, i tell the nurse/attendant/whatever that they have ONE shot and that's it; no do-overs, 2nd chances NOTHING! and no-one ever has a problem....i've heard some horror stories about rolling veins and shit...so on Friday, the chick tells me that they are going to take blood and then set up the IV blah blah blah...I say okay and nothing else, she was a bit of a talker so i didn't want to encourage her; let's just get this shit started already!  She put on the torniquet, started tapping the vein and feeling around for it, stuck the needle in and NOTHING!  WTF??!?!?  the vein, as she put it, kept running away from her...eh???  really???  and she started poking around, "trying to catch it"...i couldnt believe it...i should have threatened her like everyone else!!!  eventually, she had to ask someone else to do it because she never "caught" it...by this time, i'm thinking i CANNOT do this again, so this one better get it right - she did and we started the process...

My Arm w/all the IV Tubing

I stayed in for the most part this weekend but I have noticed that either my body is trying to get used to this additional medication or something, but it almost seems as if the Tysabri is now negating what the Ampyra was doing.  I'm not dragging my feet but somehow i can't stay on my feet as long anymore.  UGH!  i called my doctor's office to talk about that and left a message..so more to come

Happy Times!

Had dinner with my fellow MSers last nite.  we had a really great time and it was good catching up with them - i haven't seen then since the end of the seminar.  We exchanged war stories of the past few months, laughed, they commented on my walking and just had an overall good time.  I've said it before and I'll say it again, my friends and family are the best at supporting me and making adjustments etc, based on my needs but there is nothing like talking to and swapping stories with other MS "sufferers".

Anyhoo...tomorrow is my 1st Tysabri infusion; I have to admit that I am extremely excited.  I am hopeful and staying very positive about what this treatment can do for me. 

• The risk of the brain infection is in the back of my mind, but way way back; I'm not going to lose sleep over it.

I'm already enjoying NOT sticking myself everyday...in fact i was supposed to be off of it for 2 weeks prior to the infusion, but i stopped it about 3/4 weeks ago :-).  I go in at 1:00 tomorrow afternoon and will be there for 3 hrs (pre-infusion work/infusion/monitoring) - honestly, i can think of a few better things to do for 3 hrs on a Friday afternoon - but hey!  I chose a Friday afternoon so that I have the weekend to recuperate if necessary.

Wish me luck (from across the miles, oceans, continents etc)!!!

Waiting Game

this last waiting game I've been playing is over!  I was contacted by the MS Center yesterday and have scheduled my 1st Tysabri infusion on 6/4.  The most surprising news?  The insurance company claims that they will pay 100%...when I exclaimed in bewilderment, the chick said, "yes that's what they said, but u can call me before u schedule the 2nd one to confirm that they paid in full for the 1st one if u'd like."  WOW!  who woulda thunk it...not me!

So...before starting the infusions, i have to be off of the daily shot for 2 weeks...since this process started, i have been slacking off taking the shots - i cyah lie.  So, I missed last week Thursday and Friday (the legs are the sites i hate the most), took it Saturday and completely forgot Sunday.  Yesterday morning, for whatever reason, I decided to do the right thing and take it.  F*CKIN A!!!  because of that, I couldn't go in on 5/21.  (Since this is new and I'm not sure how I'll react (side effects and all!), I want to go in on a Friday for the 1st few times.) 5/28 is out - won't be in town...so I have to wait all the way till June!  That leaves me a whole week to continue with the bloody daily shot - F*CKIN A!!!!

On aother news...the Ampyra continues to work; still no side effects and walking almost like a champ! :-)