Finally

I'm finally back to "normal" after Miami.  If i have to b honest, i was a lil scared for a while there.  It was so strange...so good in Miami and then i come back here and was a completely different person.  I was so shaky (much shakier than normal) and unsure of myself, i was even afraid to go anywhere on my own (so i didn't).  i was hopeful that my body was just rejuvenating itself/getting over a hectic weekend, but at the same time there was a thought in the back of my mind that Miami was my last hurrah!  the end of the good times and i'd have to make adjustments.  Was I upset that i'd gone and had such a good time?  HELL NO, but...

 Well everything is back to "normal" now.  Life as i know it can go on...

   

In other news...

i think we've finally found a winner!  After 19 months of trying, we have finally found the vein that works.  For the past 3 infusions, i've only gotten stuck once and the nurses have had NO problems filling up 3 vials of blood.  I don't like to use the normal vein where everybody goes (inside the elbow) because that would mean that i'd have to keep my arm straight for 2 hrs (not happening!)...so they always have to go look for other veins to use.

Well this one on the inside of my left wrist is a winner - even I can see it sometimes!!!  better late than never i s'pose.

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...

Well...

My doctor's visit didn't really go according to MY plan.  It's not bad news, but i havent gotten a prescription for the new drug.  UGH!!!

I have to be approved by the insurance company BEFORE i can get the drug.  I have started the process...the forms have been signed, but it will be a few weeks before I am approved (by every Tom, Dick & Harry); who knows when i'll actually HAVE the drug in hand....again, oh well, not much i can do about this.  At least the process has started.  He also told me about an alternative to the Ampyra (in the event that i am NOT approved or the cost is astronomical) that will be cheaper and i won't actually have to go thru any kinda approval process.  Maybe more to come on that...

I have to admit, i never went to see him regarding my walking issues.  I didn't think that it was a sypmtom per se, just the disease progressing along it's awful course.  Well he got to see me first hand yesterday and is concerned that i may be relapsing!  Oh Lord...really?  As a result, he has sent me for a brain/spine and thoracic MRI; a brain MRI is long and torturous enuf, I wonder what all of them put together must be like.  Not looking forward to it really...but again, what can i really do?  The other thing he informed me is that i am suffering from Spasticity.  I've heard of/read up on Spasticity before, but i thought that it manifested itself as jerky movements accompanied by pain...didn't realize that the stiffness/weakness that i suffer from is also part of it.  To help with that, he has given me some muscle relaxants.  He also mentioned my going on steroids to help with it, but i told him that i'd rather NOT do that, so will try the drugs (i have no problem taking drugs) combined with PT and hopefully, things will get better. 

• Where the hell did I pick up this disease? 
• How am i the "lucky one" to "pick up" this disease?
• Why me?

Soooo many questions that i have no answers to...it is what it is, i guess.  I didn't ask for it and can't return it so i just have to deal with it!

Ampyra Updates

So, I've found out a little more about the new medication.  Remember the last thing i discovered was that it would cost $1056 for a 30-day supply?  Well i was on the manufacturer's site yesterday and found out that:

1. Some patients meeting a certain income requirement may be able to get it at no cost! (i can dream on about this - i am almost positive that i won't qualify)
2. Other patients who are on Medicare Part D (as opposed to A, B or C?) may be able to get some kind of financial assistance
3. Yet another subset of patients with private insurance (this is where I fall) may be able to get it for a copay of $40

WOOHOO!!!  I think that i can handle $40 a month for my medication.  The drug is also only going to be available thru specialized pharmacies and will be mailed to patients - it won't be available at ur local CVS.  I already use one of those pharmacies so here's hoping that mine will carry it and it won't be too much of a hassle for me to get it.  Altho, i will say that NOT having to fork out $1K a month is plenty to be happy about even if i have to run around the place like a chicken without a head to actually get it mailed to me.

There is also a Webcast being held on March 17th that i plan on attending; hopefully some of my questions will be answered there.