Friday, March 6, 2009

So soon?? Will the party be over?

This just in, from a Google alert sent by email:


ZURICH -(Dow Jones)- Novartis AG (NVS) chief operating officer Joerg Reinhardt said Wednesday Novartis plans to file experimental multiple sclerosis pill FTY720 for regulatory approval before the end of this year.

Reinhardt was speaking at a press conference to detail the pharmaceutical company's fourth-quarter earnings.

Company Web site:
-By Anita Greil, Dow Jones Newswires; +41 43 443 8044 ; anita.greil@
(END) Dow Jones Newswires 01-28-09 0426ET
Copyright (c) 2009 Dow Jones & Company, Inc.


So, the GREAT news is the drug will be submitted for approval by the end of this year...

The news that is between those lines is that my free drug ride may be ending sooner that I hoped.

Don't get me wrong -- I'm thrilled that the MS population will be able to finally have a pill added to their choice of CRABs, but I don't know where I'm going to get the money to pay for this stuff when they start charging. As soon as it gets approved, I've got to fork over money for the stuff. I'm uninsured and don't qualify for Medicaid...what am I going to do??

I sure wish part of the agreement to enter the clinical trial had been "free medication for life". Would it really have put that big a dent in Novartis' pocket to take care of us guinea pigs who so graciously allowed the experiment to proceed to the point at which their cash cow will be ready for milking??

Wednesday, March 4, 2009

It's my anniversary!

I'd be excited if it were "of the day I graduated from MIT" or "of the day I sold my first oil painting" or "of the day I received the Congressional Medal of Honor"...but nooooooooooo.

It's the 10th anniversary of my MS diagnosis. Oh boy.

But, even though it's not really the kind of milestone you celebrate -- and I can see my sister now, quickly yanking the balloons down behind her back and throwing a dishtowel over the cake -- it's still a time for reflecting.

I vividly remember the day of my diagnosis. I actually was diagnosed a week or two before that, but I went to the head of the neurology department at Shands Hospital at the University of Florida in Gainesville, FL for a second opinion.

When that second doc confirmed what the first one said, that's when I gave up hope of thinking the first one was off his rocker and it was all just a big tadoo over a pinched nerve or something.

I drove myself home somehow. It was an hour ride in the silence of my own car, by myself, crying the "poor me" freakout cry.

I remember thinking first of my son who was not yet quite 6 months old. What kind of mother could I be? Since my neuro told me he had seen a lot of MS patients and he felt my case was "particularly aggressive", I was certain that death in a matter of a short time was imminent.

My mother knew a woman with whom she used to work who had been diagnosed 10 years prior. She was on Copaxone and had been in the clinical trial for it. Before that her husband had raised bees and they tried the bee sting therapy. She looked wonderful and had not had a relapse in many years. She didn't have any outward, telling signs of MS, and that gave me hope for my future.

I remember thinking..."what will I be like after 10 years??" and all the answers I conjured up terrified me. If I hadn't killed myself off, I had myself at the very least bed ridden.

Now, on this day of reflection, I think I want to see those balloons and have some of that cake after all, Lorraine. I've had my ups and downs and some really scary relapses that I wondered "is this the big one?", but I'm here. I'm walking, running and jumping, loving, eating, breathing, laughing, writing, complaining, joking, taking my pill and happy to be alive.

So for all you newly diagnosed, take away this nugget: I feel better now than I did 10 years ago. It doesn't all have to be gloom and doom. While MS is a devastating disease and has robbed so many of so much, you aren't automatically sentenced to that end of the spectrum.

I thank God every day for the fact that I have regained nearly all I have lost from each relapse.

MSers have a way of being thankful for the little things that the rest of humanity takes for granted.

Every morning when I get up and the carpet tickles my feet, I am amazed I can feel it... and I say "thanks, God," in my head. I know what it's like not to feel that, and I didn't like it one bit.

So, it might seem weird to say, but so far, I'm having a very happy anniversary! :-)