Excitement!!!

So, yesterday I had to go back to the MS Center to get my lab results etc. to see if I qualified to go on the Tysabri.  I also had a dentist's appt earlier in the morning.  I parked my car and spent most of the morning on my feet and then it HIT me...

THERE IS AN IMPROVEMENT!!!!!!!

WOW!!!  Could it really be?  Normally, when i walk to my dentist's office; i struggle (i have to park on the street blah blah blah)...again, normally after going to his office and going somewhere else, I would REALLY be struggling.  I got home after all my appts. and I was still walking as close to normal as i have in months!!!  My feet weren't dragging as i took steps and I was actually walking "fast".  A friend of mine saw me and he could actually tell that there is a remarkable difference...No side effects thus far either!!!!  I know that it's early, so i don't want to get my hopes up too high...but...

anyhoo...so the doctor who saw me today said to me, "you're in perfect health except for this blasted neurological disease eh!".  I prefer to use some other choice words to describe the MS, but hey...So...what does this mean?  Now i have to play the waiting game (as usual).  Someone from the center is going to call me after talking to my insurance company (ugh!) to tell me my copay and set up an appt. for my 1st infusion of Tysabri.

I cannot tell a lie...even though this treatment has this awful potential side effect, I CANNOT WAIT to stop taking the stupid ass daily shot!!! :-)

The Spoon Theory

I read this today and thought I'd share...it's kinda lengthy but summarizes very well how it can be dealing with a chronic disease.  It was actually written by someone with Lupus, and is a little more extreme than I am, but works just as well with other diseases too.

The Spoon Theory

A Lil Bit of Knowledge

"They" say that ah lil knowledge is a helluva ting.  I've been on "patientslikeme" more than ever this week.  I'm on the verge of stopping that in its tracks.  Quite a few people are on Ampyra or the 4-AP form of the drug.  I'm reading all their stories (good and bad; mostly good) and i can't help but wonder "what's in store for me"?  It's been 2 1/2 days...If I'm to be honest, I have no idea if i see a difference or not.  In the back of my mind, I keep wondering if I'll have any side effects and what they might be.


As i mentioned most of the stories have been good, but as usual, some of the side effects appear to be more of a pain in the ass than anything.  I've said this before and I'll say it again, "one day someone needs to manufacture a drug that does ONLY what it's supposed to do and NOTHING more!"

Day One

I had a great weekend and today was day 1 of the Ampyra.  I've been on the patientslikeme site and I've been reading other people's experiences with it and most reports have been favourable, so only time will tell if I'll be as lucky.  I'm hoping for good things!  I would say "GREAT" but I don't want to get my hopes up too high.

so...funny story...

I had to go back to my neuro on Friday for them to read my TB test results.  I didn't actually have to make an appt for that because quite frankly i swear anyone can read those results.  I could have called them and told them that I didn't have TB.  Anyhoo, so i just had to go in and get it done.  Well long story short, I was running late...so I got to the doctor's office with 5 mins to spare!!!  The office is up on the 5th floor of the building and luckily G was with me so I didn't have to park.  I pulled up, got out of the car and G screamed, "5 minutes!  no pressha!!  but RUN!!!"  i think it took me the entire 5 minutes to get upstairs because naturally I tripped right by the door of the building - didn't fall, but i had to steady myself before i could continue...

Never a dull moment with me...

Got Mail!

so i got the Ampyra yesterday...let's see what this shit can do!  There's been a slight change of plans...I'm going to start taking it on Monday.  I decided that since no one can tell me how it will react to alcohol (altho as i've said before, the medication fact sheet does not specifically state "do NOT drink alcohol while taking this medication!), I'm going to LIME HARD this weekend and start it on Monday...that's my way of dealing.

This has nothing to do with the new treatment mentioned yesterday; i'll be taking them together.  The Ampyra has been proven to specifically improve the walking disability in MS patients, the treatment is what you take to hopefully slow down the progression of the disease entirely.

On another note, I have bitten the bullet and bought a pill organizer *GASP*.  I don't let this disease slow me down too much so i'm still limin as usual/doing my thing, but if i go somewhere, of course i have to walk with my medication (remember i'm on medication for the Spasticity too).  Now I'll have another pill as well (the Ampyra is a pill- YEA), so i got a very cute organizer thing that i can actually discreetly place in my pockets if I'm out and about.


What the?!?!?  has it really come to this???

SUCKS to be sick!!!

More Results*sigh*

Did i ever mention on this site that I hate having this disease?  Well i do...i really do.

I went to my neuro yesterday to get the results of those 3 MRIs -brain, upper and lower spine.  Good news is that I have no additional scarring on my brain.  Bad news is that i have 3 lesions on my spine.  Now, in all fairness i can't really classify that as total bad news.  It explains why I am having so much trouble walking i s'pose.  The unfortunate thing is that this is the first spinal MRI i've ever had so we have no baseline to measure against.  He is concerned because I have to admit that it has gotten progressively worse over time.  It used to be that i would have problems after walking or standing for a long time; now it's almost always ALL the time regardless.  PT helps it does, but it doesn't negate the fact that the walking problems have progressively gotten worse.  He is concerned (and he raises a good point) about what state i might be in in 6 months.  Anyone around me regularly can see how it's gotten progressively worse.  So, where does that leave me?  he wants to change my meds...

Good news/bad news.  The good news is that i will no longer have to take a daily shot (YEAH BABY!!!).  The bad news is that the one he would prefer me to go on has a side effect of a brain infection - SHEEEEIT!!!!  It's a much more aggressive medication than the one i'm currently on and i've heard great things about it but... really?  do they always have to have shit hanging over ur head like that?  can't something just work FOR u without all the bloody side effects???  It's also an IV infusion so I'll have to go into his office once a month to get my infusion - HAPPY HAPPY JOY JOY!!!!  The cost?  haven't a clue but once again, I have to wait to be approved by the insurance company and everybody else in the world before i get started.

The brain infection is rare (thank God!) and it is more likely to occur in patients with a compromised immune system.  So they do extensive blood testing and TB testing before you are even considered as a good candidate for it.  I've done research and in this instance, i believe that the benefits outweigh the risks and I'm willing to give it a try.  He said that we can try it for 6 months and see how it's going/how I feel and re-evaluate if necessary.

Did i ever mention that I really hate having this disease?  I know that it's not the worse thing that can happen to me and for that I'm grateful, but i really do hate having it.

Got the Other Call

Just a quick update today...

It's in the mail!  The medication is going to arrive on Wednesday...I will start taking it on Thursday.  OYE!  Hopefully I too will have good news to report after i start taking it.  I eh go lie, I'm a little scared...what with its being a new drug and the side effects and all, but it is what it is.

Research Continues...

so...i've posted the alcohol question on the website I mentioned before; www.patientslikeme.com.  It's interesting to see the responses I've gotten so far.  They've been from people who were on the generic, 4-AP form of the drug for a while, people who've recently started and those who are actually taking Ampyra.  They've also copied and pasted links and excerpts from material to substantiate their responses.

It appears that there are no adverse effects of the 2 together BUT considering that dizziness and increased falling may be side effects, probably don't want to have the 2 in the system at the same time.  I go back to my neuro on Tuesday; i'll bring it up with him then...so we'll see...more to come - maybe!

HA HA!

I'm laughing  but it's so NOT funny!

Wouldn't u know it...it appears that no-one knows how Ampyra will interact with alcohol.

oh goody!  Just my luck...I should have been in the test group.  Did no-one think about doing tests to see what could/might have happened?  Am i the only one who thought of this?

What the??!!??

Oh Shit!

so I called my mother last nite to give her my good news.  We're talking, just about the medication in general - side effects, how it will affect me, when will i see improvements, etc - when she says, "what about alcohol?  can u drink while taking it?"  wait a minute...i have NO idea!!!  WDH???  i had no clue...how did i NOT ask my doctor that question?  I asked him all kinds of questions and didn't ask him the most important one!!!

Now, don't get me wrong...i am no alcoholic, but i enjoy some of the finer things (vodka, caipirinhas) in life at times :-).  who doesn't?

I've called and left him a message..hopefully someone will get back to me sometime today!  Ayeyayaye!!!!

Good News!

I was approved for the new drug!!!!  I will be getting a call soon from the pharmacy to set up shipment arrangements:-)  Also my copay is $50/month but I qualify to get it at a discounted rate that was negotiated by the drug manufacturer of $40/month...WOOHOO!!!

4/9

HAPPY BIRTHDAY K!!!!!

Forward Progress

I called my neuro's office today.  The prescription has been submitted to the pharmacy.  Of course there was an initial problem because my name was input incorrectly (WOW really?  I'm shocked) but it appears to be moving along.

I called the pharmacy to confirm...that chick (who of course said to me that she couldn't find me when i told her my last name!) eventually found me when she opened her eyes to look and told me that Sheila (my case manager) will call me as soon as she has confirmed my benefits with my insurance company.  She stressed that i need to give them time to confirm with the insurance company (in other words, don't call us, we'll call u)

So as usual...as with anything MS related, i'm playing the waiting game once again.

• Waiting to see what (and how) a new symptom might present itself and affect me - my life!
• Waiting to see if i have additional scarring on my brain
• Waiting and hoping that my medication is actually working and slowing the progression of this GD disease
• Waiting to be approved by the insurance company to get drugs that will help me overcome of the symptom of a disease that I have (and dint ask for)

Geez!  nothing is ever easy...

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!

Today

Happy Easter to one and all!!!

Got the Call

the cost?

$350 out of pocket on the day and then the insurance company is going to cover 80% of the entire cost - ARGH!!!  i hate this insurance i have...i've had MRIs done before when i was with another insurance company and paid NOTHING out of pocket...SHEEEIIIIT!  guess i'll have to get over it.

THEN!  the same idiot i spoke with earlier this week who asked me about my name called back.  Now today is Friday and I'm going in tomorrow for the MRIs...she called me back TODAY and said, "now there is a $350 patient responsibility for these procedures" *yes i already know, this is only the 3rd call from u people in 5 minutes*

Chick: how are u going to pay for that

Me: *not that i think that it's any of ur business but*Ahm...my credit card...

Chick: So would u like to go ahead and do that now??

again...is she serious???  Why the hell would i pay for a procedure that i haven't done yet???  these people are insane!!

Me: Can't i pay tomorrow when i get there?

Chick: oh yes, i'll just update ur file...

Oh yes u will!!!  WTF????  these people have me constantly using foul language...really????  who the hell pays $350 for a procedure that hasn't been done yet????  Am i the crazy one here?  

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.