Elevated Liver Enzymes...

... were known to be a risk as far back as before I signed the original consent form.

Here's a screen shot of the scan I made of the original form:



The study nurse did tell me a while back that one person had to be taken off the meds due to elevated liver enzymes, but was subsequently restarted when they returned to within normal limits.

I'm just hoping I'm back to normal at the next blood draw.

{crossing fingers}

Down for the count

Two Sundays ago I was at my elder son's house and found that his roommate was coming down with a nasty case of "something". My son and his wife soon followed in her footsteps with everyone in the household --save my 7 year old granddaughter -- rolling around moaning about how terrible they felt in between trips to the bathroom for a chorus of dry heaves.

I decided to keep my granddaughter for a day or two to let everyone have time to revile in their own misery. And the first night we had her, she spiked a fever of 104. So much for saving her from the terrible case of "something."

That was last Tuesday. For the next 4 days I was playing nursemaid/quarantine guard to my granddaughter who so quietly laid in bed, never complaining, and barely moving about. I was trying hard not to catch whatever IT was and washed my hands until they were raw and cracked.

I ended up taking her to the doctor who looked down her throat with a black light/hand gun looking thing and pronounced "She's got strep!"

I'm not convinced of the accuracy of a tool left over from some hippy pot-smoking sixties era novelty shop, so I'm still skeptical that she had strep. We got antibiotics and after another 4 days she seemed better. She probably would have felt better by then anyhow.

So two days before she returned home, I awoke in the middle of the night to much stronger feelings of achiness than I felt should be normal for my nearly 50 body. By midday that day I was spiking my own fever.

I took Advil and laid in bed for an entire weekend while my elderly mother took over caring for my granddaughter. At least I felt she was probably past the contagious stage.

After my 3 days of misery, we finally got my granddaughter returned to her now-well parents, and everything was fine for the next 24 hours.

Then my son awoke on Wednesday saying he ached all over and he had a fever of 101.

Here we go again.

I took him to the doctor today because he still has the fever, but he decided to upgrade his illness and added on bathroom trips for explosions from both cannons if you know what I mean.

The trip to the doctor was mainly due to good old Murphy. He's got some stupid law that mandates a child who is slightly ill on Friday will become deathly ill before the doctor re-opens on Monday. However, this law can be overriden by actually seeing the doctor on Friday thus nullifying the death sentence and causing the mother to appear to hover like a helicopter.

Worked like a charm. The nurse had him blow his nose in a cup (ewwww!) and whatever they did to test it came back saying he has Influenza type A. Great. The bug now has a name.

It has to have been the same thing I had. I did feel nauseated and a little dizzy and very achy and had a fever that for all the world wanted to be 101, but never quite got there, always stopping at 100.8.

Which leads me to the conclusion that my immune system is in better condition than that of my 10 year old son's. I fought this bug off without hardly breaking a sweat and mostly in my sleep.

That's the good news.

Now, after all this, and walking around with a swelled head about how profoundly superior my immune system is from that of the average person, my liver has delivered me a possibly crushing blow...

I get a phone call from the trial coordinator and it's nowhere near my next scheduled appointment date. After swapping our viral stories about how our families have been ill, she got down to brass tacks.

It seems my blood work came back from my last appointment and my liver enzymes (which have never in 3 years been an issue in this study) were slightly elevated. EEEEEK!!

I have to come up for another blood draw next week and hope that the situation has resolved or at least plateaued. Otherwise who knows. She did say that at the current levels I'm not in any danger of having to get off the meds. But she's looking at my blood from a month ago. Who knows how much more *elevated* those little buggers could have gotten?!?

And here I have been worrying all along about losing the medicine due to no medical coverage once it gets approved. I may not last that long!

The only thing I can say that has changed since 6 months ago at my normal liver enzyme levels is my recent discovery of Jello Shooters.

I started making them for John to take to his weekly poker game and naturally I had to sample them to be sure they were fit to serve.

Well, one thing led to another and my friend Karen and I decided that Saturday would be our Jello Shooter making day so that they would be ready for John on Sunday. After all, sampling the recipes is more fun with a friend.

I'll be trusting everyone else's opinions from now on, just in case the combination of Fingolimod and Jello Shooters is what has my liver in an uproar. Sigh. It was fun while it lasted, but I'd rather be on Fingo than hopped up on Jello. The choice is a no-brainer, fortunately for me.

I'll be sure to post back when I find out the results. Not sure how long it takes, but it's been weeks since I had the blood draw they called me about today, so I'm guessing it'll be another several weeks.

Maybe between now and then I'll find something inspiring to blabber about on here...

A Modicum of Happiness

My day starts early. 5am to be exact. Some of you will say "that ain't early (if you have poor grammar)" and others will say "OMG I thought that was still considered the night before."

When we moved in with my elderly mom last summer I knew it would be like this since we moved 20 min. in the WRONG direction from my son's school which was already a 15 min. drive. PLUS, add on top of that the fact that he's now going to middle school and they begin their day even earlier than grade school and you have 2 very squinty-eyed yawning people every morning in this house.

But we have both figured out a way to approach this that I truly believe my MS taught me. The trick is to look for the good.

We each have a travel mug and mine's filled with decaf and his has hot cocoa.

The drive is long, true, but it's also beautiful. We start out walking down the wooden walkway that my boyfriend built last summer. It's like going to one of those nature parks where there is a deck-like path that winds around through the wilderness. The view from this walkway is spectacular and always sets the mood.

We get in and drive the winding road to town surrounded by alternating patches of housing developements, wild Florida woodland, and farmland where the locals grow corn, potatoes and cabbage.

We merge onto the 4 lanes of HWY 17 North and head into the small town of Palatka. (Prounounced like the sound of a tall cow crapping on a flat rock -- Puh LAT kuh).

We crest the Memorial Bridge over the St. Johns River where we never cease to be amazed at the beautiful sunrise surrounding us. Even on the rainy gray days, we still find reason to be in awe for on at least one occasion we were enveloped in a cloud atop the bridge (just fog really, but if my son wants to think it's a bona fide cloud he can).

And we aren't even half way there yet!

We drive along, sometimes singing, sometimes practicing our jokes on each other, always talking in character voices, and never ceasing to make each other laugh. He especially likes my Elmo impersonation and I really get a kick out of his ailing, grumpy old man he invented named Mr. Abernathy who loves oyster crackers, reminisces about the days when a dollar could buy you anything, and is constantly complaining about today's youth.

One time he made me laugh so hard I had to pull over to catch my breath and wipe the tears from my eyes. All the while, *Mr. Abernathy* kept complaining about how I was going to make him late for school, "goll durn it!"

Anyhow, we turn off of 17 and head out State Road 100 W. where it's so rural I have to make certain I have gas before the turn off because it's 15 more miles to the school without a gas station in site.

The road is lined the whole way on either side with stands of pine forest planted by Georgia-Pacific and other sections that have scrub oak, palmettos and other trees native to the area. You feel like your going "over the river and through the woods to Grandmother's house we go.."

There are power lines along one side of this road and the trees have been trimmed away to keep from touching them.

Now I don't know if it's just us, but I swear to you that whoever is trimming the trees learned how to do it working for Disney.

The first unusual tree we come to is the Dinosaur Tree which stands with a thin neck above the rest and hangs out over the road like T-Rex. Next comes the Elephant Tree complete with trunk that snakes first down then up in an S curve.

Last but not least is our favorite of all. The Turtle Tree. His head looms over the road with an open mouth grin sporting one tooth hanging down. In the distance beyond this tree is another sculpted growth that creates a "wing" on our turtle when everything lines up just right.

We know when we come to the Turtle Tree that we are very nearly there. We prepare to slow for the school zone and he starts zipping up his jacket and gathering his binder and other school supplies.

I bring my camera on these trips so I can take pictures if we have time and if I remember. For that reason, I have none to post yet.

It's an amazing ride that is always the same and yet always different. Sure, we could look at it as the ride that takes an hour round trip at a time of day when I'd rather be sleeping, but we both have learned to embrace it and look forward to it as our own personal time together. No computers, no chores, no rules really... just fun.

And only 35 minutes after it began, our morning ride is over and it's time to head back. We say our "I Love You"s and he begs me not to embarrass him (again) by yelling it out the window in my Elmo voice. And then he's gone.

I turn the car and head back the way I came, but the ride home sucks. I've seen everything already, there's nobody to talk to and the sun is in my eyes. Hey, I did entitle this "A MODICUM of Happiness".

The flip side of anything is never that great. Just look at all the 45's we never played the *other* side of.

My MS taught me to at least TRY and make the best of things. During this MS Awareness Month, tell me, what has your MS taught you?

My Eyes

Last time I posted was shortly after my last checkup where I had my eye exam and got a lot of visual side effects along with a headache I was told was a migraine.

A few days after this event I had to take my mom to see her eye doctor.

It seems every time we go to see him the conversation inevitably turns to my clinical trial. This visit was no different. When I saw him putting the dilation drops in my mother's eyes it made me blurt out right then and there:

"Hey doc, that reminds me... have you ever heard of someone getting a migraine caused by using those drops?"

To which he replied "It can happen, but it's not a common side effect. Why do you ask?"

I proceeded to tell him about how I got this centralized headache over my brow area and my eyesight got really blurry, light hurt my eyes, and anything bright was surrounded by a halo and had a "star filter" effect ( where all lights looked like star bursts).

His curiosity piqued, he rolled across the room toward me on his little round stool. Peering into my eyes, he brought his light in from the side and shone it into my vision starting from the peripheral edge.

He said he thought I should have been checked right then and there at my visit in question for having a Closed Angle Glaucoma Attack.

He said I had all the classic symptoms and that it would be more likely than a migraine especially since my *migraine* was on both sides of my head.

Being the hypochondriac that I am, I wouldn't have done my self-proclaimed title justice if I didn't worry myself into being totally convinced I was on the verge of going blind (<-- I had to edit that because I have a typo that said "blonde" heh an even SCARIER proposition).

Naturally, I went home and googled it to death.

He said there were tests that can be done right in the eye doctor's office and the cure for it is poking holes in your iris (the colors part) with a laser (eeek!). Like I want to be the freak with 3 pupils. But better I can see than not.

So I called my clinical trial coordinator and she was not concerned at all. She said my eye doctor for the trial would have checked for that (I thought the same thing) upon hearing of my headache. In fact, I told the doctor about the headache when she was looking into my eye with what looked for all the world to be one gargantuan eyeball of her own, but turned out later to be just a large magnifier (much to my relief).

The trial nurse said that this doctor was SOOOOOOOOOO good (everybody: "HOW GOOD WAS SHE??") she was so good that she actually caught early stages of glaucoma in ANOTHER trial patient (I could have sworn she meant this very SAME trial) and the patient didn't even exhibit any symptoms.

While this might seem a comforting fact to my clinical trial nurse, she obviously is NOT versed in the workings of a hypochondriac's mind. For I immediately jumped to the conclusion that Fingolimod must cause Glaucoma. Otherwise, if I had a suspicious episode AND another patient was actually diagnosed, it stands to reason it's the drug (in my mind, warped by hypochodria).

For now, I'm letting it slide. She said she'd run it by the doctor and see if she wanted to reevaluate me. I haven't gotten any return call asking me to drive up there, so a) she forgot to say anything or b) she didn't think it was necessary.

I go back for another eye exam in either 3 or 6 months and you can bet I will keep an EYE on the situation until then. Much as I plan on keeping ABREAST of the situation with the mammary cysts.

If anything new happens, I'll be sure to post it. I can't remember ever having quite that spectacular a change in my vision from dilation drops before, but I may have now worked myself up in to false memories of just how bad it really was. For one thing, I DID drive myself home so it's not like I could have been having that bad of a time, could I?

I know one thing I am sure of. I have a new reason for a panic attack at my next clinical trial checkup. I never would have guessed I'd be terrified of eye drops.

FTY720 TRANSFORMS ext. phase checkup at 6 mo into 2nd year

Went for my trial checkup yesterday and had great results!

I didn't quite beat my best time on the timed 500 meter walk of 11 min 46 seconds, but I sure gave it the old college try. I was limping and stiff legged by lap 12 (out of the 25 laps of the hallway that somehow equal a distance of 500 meters).

I ACED that MSFC test where you have to listen to a recording of a guy spouting numbers every 3 seconds. Your job (if you choose to accept it) is to add the 2 numbers he said together, say the sum out loud, then throw away what you just said and concentrate on the last number the guy said so you can add it to the next one he says... it goes something like this.

Guy: 3
Guy: 7
Me: 10
Guy: 5
Me: 12
Guy: 5
Me: 10
Guy: 9
Me: 14

...and so on

It can get very hairy when Recording Guy starts saying things with double digit answers. All that math can wear a girl out! And I'm not good with adding 9 to anything although logically it should be as easy as adding 10...minus 1.

At one point, in the middle of the test, I faltered and couldn't come up with 9 + 6 = 15... and while my brain was farting, he spouted another number. I quickly said "15!" and then had to remember that he was still saying numbers... I was able to blast out 3 correct answers in one massive breath and get back on track.

It was close, but I scored 100%. :D

The clinical trial nurse shared with me that she once administered the test to another trial patient who is a school teacher and she failed so miserably she broke down in tears. I can really relate to this as the first time I took the test I didn't know the *trick*. Since I devised The Trick © I haven't failed yet.

It consists of simply saying the answer necessary and "throwing it away" only to repeat over and over (in my brain) the number the guy just said... so it would go something like this:

Guy: 4
Guy: 8
Me: 12 (8 8 8 8 8 8 8 8 )
Guy: 9
Me: 17 (9 9 9 9 9 9 9 9 )

And that's all there is to it. Since concocting The Trick © I now no longer fail this test, my hair is growing in thicker, I have made a fortune on Wall Street, and my boobs are 3 times their normal size.

You're more than welcome to use The Trick © but be forewarned: your mileage may vary.

Other highlights of my visit included the animated discussion of the new name "Gilenia" which I stated sounded like LymphopENIA or some other such medical deficit. My clinical trial nurse said to her, it brought about the image of GardENIAs.

I told her that unless they put a flower on the box, I'm going to be sorely disappointed.

I had my PFT performed by a new guy who asked me if I could teach him how to administer the test and then, after a big ol "Ha Ha!" about that... I ended up having to teach him how to administer the test.

Well, at least the part with the flute that you have to measure peak inspiration and expiration. That thing that looks like something a pothead might get some bright ideas about how to turn into a bong... It is a clear plastic cylinder with a hole in the side, open on one end and closed on the other and hooked to some plastic tubing that in turn connects you to the machine that knows everything... every little breath you take, so to speak.

The point of the test is to breathe normally, and then take a big breath and cover the hole in the "flute" with your finger for a couple seconds during peak inhale or exhale, to create resistance, thus in turn, measuring your lung function.

We kept getting the timing off and I was getting my cardboard mouth guard soaking wet and soggy. That's when I told him "you're not doing it like the other guy does it."

He perked up hoping for an answer to how to get this old stupid dog to perform his new trick.

He said "how'd he do it?"

I said "He said 'Breathe nomal, finger over the hole, deep breath in, finger off.'"

It was like a light shone down upon him from the heavens as he had his eureka! moment. You'd have thought I just gave him the secret to the universe.

Then his eyes narrowed to little, untrusting slits.

"If you KNEW that, why didn't you just DO that?"

To which my reply was "I was the one having to breathe. You can't expect me to breathe AND think at the same time, can you?"

With the test completed he walked me to the exit door, thanking me for actually teaching him something about communicating his directions to patients better.

I told him he'd be getting my bill in the mail.

Then on to the eye exam. Well actually I got it all out of order since blood draw was first, PFT second, EDSS and patient questionnaire was next, and then eye exam last, but that's the power of being an Author. I can relay it any way I like. And since I have short term memory issues, I'm not worried so much about order of events as much as I am ecstatic that I can recall any of them.

So, where was I? Oh yeah, the eye exam. There is one important reason that I remember distinctly that this was the LAST test of the day. Because I had my eyes dilated so much I had to sit in the parking lot for an additional hour in order to allow them to adjust enough to attempt a 2 hour drive at dusk in rush hour 6 lane traffic.

The eye exam was not anything to speak of really. I was in and out and given a clean bill of eye health in a relatively short time (in waiting room years).

But the part I really remember was getting the drops. 3 kinds. One to numb me for the pressure test, some yellow stuff to see what, I don't know (but it really freaks you out when you wipe your eyes with a Kleenex and then look and see fluorescent yellow stuff on it. Eeek!) and then the drops to open up the pupils.

After I got the drops, within a minute I could feel them draining into my sinuses. And within another minute my head started to hurt. Just mildly at first, but snowballing into a big old headache of peculiar intensity.

I asked the doc when she was shining that bright light in my eyes if it was normal to get a headache from the drops.

She asked "do you have a history of migraines?"

To which I said "yes", but was thinking "well DUH! Read my file, would ya??"

"Oh, well those drops can precipitate a migraine so be sure to get some sunglasses on the way out."

So I left there looking like I just came out of a 3D movie that I really hated. I had the stupid glasses but all I could do was frown.

I made it home somehow. My vision looked a lot like this only you had to add in a squint factor since it was making my headache worse:

How I managed to get hom without a huge game of bumper cars is beyond me.

I still have the headache today, but luckily my vision has returned to normal.

All in all, it was a pretty good day. I liked all my results and all the people who work with the patients in the trial are great to be around and fun to talk to. Everyone has a good sense of humor. Of course, they have to if they are going to be dealing with the likes of me. :D

The lead investigator, when I told him I would be making him my regular neuro after the trial ends responded with a big smile and quipped:

"I'll be sure to call in sick that day."

Gilenia? Are you serious? You'll always be Fingolimod to me.

This little tidbit just hit my inbox courtesy google alerts....

Novartis Oral Multiple Sclerosis Development Compound Gilenia®* (FTY720) Granted US Priority Review Status

Really??! Is that the best you could do? How the hell am I going to remember Gilenia? And I'm not crazy about the "enia" suffix. Sounds too much like a depletion of something vital to my system. Conjures up negative connotations. Sure, I realize that it does create lymphopenia which is the primary medthod of action, but come on!

I was hoping for a little more glitz and glamor. May as well just stick with Fingolimod (which I will no doubt do).

And is "Priority Review" a fancy, scientific term for Fast Tracking? Does this mean evil people at the FDA are reading my blog and rubbing their hands together and laughing their insidious "MWAHAHAHAHAHAHA!" knowing full well that the end of the review process marks the end of my Pharm Party?

Say it ain't so!

Oh yeah, I almost forgot... Here's the story that goes with that headline:

. US Food and Drug Administration grants priority review status after accepting US regulatory submission for 0.5 mg once-daily Gilenia (fingolimod)
. US and European Union regulatory submissions completed in December 2009 for Gilenia include more than 4,000 patient years of clinical trial data

Basel, February 22, 2010 - Gilenia®* (FTY720, fingolimod) has been granted priority review status by the US Food and Drug Administration (FDA), which accepted the regulatory submission made in December 2009 for this medicine. Once-daily Gilenia (0.5 mg) has the potential to become the first approved oral therapy for the treatment of multiple sclerosis (MS).

The FDA grants priority reviews for investigational medicines that could offer significant advances beyond current treatments or where no adequate therapy exists. As a result of this designation, the standard 10-month FDA review period will be reduced to six months.

Since Gilenia involves a new active ingredient (New Molecular Entity), the FDA is likely to require an Advisory Committee meeting and evaluate the risk management program, which could result in the FDA extending its review at the end of the six-month period in June 2010.

"We welcome the decision granting priority review to Gilenia, which underscores the potential benefits of this medicine to patients," said Trevor Mundel, MD, Global Head of Development at Novartis Pharma AG. "MS is a leading cause of neurological disability in young adults, particularly in women, and this medicine has the potential to offer real advances in the care of people with MS."

Approximately 4,000 patient years of experience have been gained in MS clinical studies involving Gilenia, with some patients now in their sixth year of treatment. Data from one of the largest-ever Phase III clinical trial programs conducted in MS patients were submitted to support the US and European regulatory submissions, including results of the TRANSFORMS and FREEDOMS studies that were recently published in The New England Journal of Medicine[1],[2].

Combined data from these studies provided evidence of the efficacy of Gilenia in reducing relapses, disability progression and brain lesions in patients with the relapsing-remitting form of MS as well as safety data. Approximately 85% of patients with MS are estimated to have the relapsing form at the onset of disease[3].

Disclaimer
The foregoing release contains forward-looking statements that can be identified by terminology such as "priority review," "potential," "could," "will," "likely," or similar expressions, or by express or implied discussions regarding potential marketing approvals for Gilenia, or the potential timing of such approvals, or regarding potential future revenues from Gilenia. You should not place undue reliance on these statements. Such forward-looking statements reflect the current views of management regarding future events, and involve known and unknown risks, uncertainties and other factors that may cause actual results with Gilenia to be materially different from any future results, performance or achievements expressed or implied by such statements. There can be no guarantee that Gilenia will be approved for sale in any market, or at any particular time. Nor can there be any guarantee that Gilenia will achieve any particular levels of revenue in the future. In particular, management's expectations regarding Gilenia could be affected by, among other things, unexpected regulatory actions or delays or government regulation generally; unexpected clinical trial results, including unexpected new clinical data and unexpected additional analysis of existing clinical data; competition in general; government, industry and general public pricing pressures; the company's ability to obtain or maintain patent or other proprietary intellectual property protection; the impact that the foregoing factors could have on the values attributed to the Novartis Group's assets and liabilities as recorded in the Group's consolidated balance sheet, and other risks and factors referred to in Novartis AG's current Form 20-F on file with the US Securities and Exchange Commission. Should one or more of these risks or uncertainties materialize, or should underlying assumptions prove incorrect, actual results may vary materially from those anticipated, believed, estimated or expected. Novartis is providing the information in this press release as of this date and does not undertake any obligation to update any forward-looking statements contained in this press release as a result of new information, future events or otherwise.

About Novartis
Novartis provides healthcare solutions that address the evolving needs of patients and societies. Focused solely on healthcare, Novartis offers a diversified portfolio to best meet these needs: innovative medicines, cost-saving generic pharmaceuticals, preventive vaccines, diagnostic tools and consumer health products. Novartis is the only company with leading positions in these areas. In 2009, the Group's continuing operations achieved net sales of USD 44.3 billion, while approximately USD 7.5 billion was invested in R&D activities throughout the Group. Headquartered in Basel, Switzerland, Novartis Group companies employ approximately 100,000 full-time-equivalent associates and operate in more than 140 countries around the world. For more information, please visit http://www.novartis.com.

The brand name Gilenia has been provisionally approved by the FDA for use in connection with the product, but the product itself has not received marketing authorization or NDA approval from any regulatory authorities.

References
[1] Cohen J. et al. Oral Fingolimod vs. Intramuscular Interferon in Relapsing Multiple Sclerosis. N Eng J Med. Vol.362 No.5, Feb 4, 2010 (printed version).
[2] Kappos L, et al. Placebo-Controlled Study of Oral Fingolimod in Relapsing Multiple Sclerosis. N Eng J Med. Vol.362 No.5, Feb 4, 2010 (printed version).
[3] National Multiple Sclerosis Society website. http://www.nationalmssociety.org/about-multiple-sclerosis/what-is-ms/index.aspx. Accessed January, 2010.

Just how long....?

...Can a person taking Fingolimod expect to be in remission?

I think about this question A LOT lately. This has been the longest period of remission in my MS *career* (it's kind of like a job since dealing with it every day sucks), and I can't help but wonder when it's going to end.

Yesterday marked the 2 year, 6 month mark since starting the trial, and the 2 year, 10 month, 16 day mark since the start of my last MS attack. To me, that is insanely fantastic. I still can't get over it and (other than the part about being broke and knowing it's NOT true), I often feel like I have won the lottery or something. Well, I am winning the MS lottery I guess.

If I were a character in some video game and the cruel kid playing forced me to choose between the More Health potion jar, or to go around finding bags of gold coins, I'm taking the health every time. It's only logical that running around gathering bags of gold coins all willy nilly without regard to your Health-o-meter getting low and turning red will only result in a premature Game Over message...

Fingolimod has restored my Health Meter back into the green zone and I just don't know when the MS monster is going to poke it's head back up in this game and bite me on the butt, sending my health meter into a downward spiral.

I read somewhere on the internet (so it must be true, right?) that FTY-720 has residual effects. Some lab rats somewhere (the furry version, not two legged) were followed after being given the drug to see how long the stuff stayed in their system and had a beneficial effect. If I recall correctly, (and don't hold me to this because I can't recall correctly why I went into the kitchen and stood in front of the pantry a few minutes ago), it seemed the length of time it had a beneficial effect depended on the length of time one was on the stuff.

It would really be cool if you could spend 3 years taking it for 6 years of coverage. Maybe this trial will drag out for 10 years (please oh please) and, when the magic Fingo carpet gets yanked out from under me, I could have 10 years of residual protection.

That's probably too much to ask. It's probably more like a guy taking off a condom and saying "the residual effects of having warn it will guarantee that you are safe from STDs and becoming pregnant, I swear!". Guys. They'll say anything won't they? (JUST kidding, okay? You men out there don't need to send me snarky comments because I made this drivel up.)

Back on topic... It used to be that, way back at the start of this trial, if I so much as sneezed I would cringe and duck and wait for the wrecking ball with the big "MS" logo on the side to smash me where I stood. I used to have pretty ferocious attacks which were precipitated by nothing more than a head cold or stressing about money. It was only natural, when I experienced these triggers, that I would brace myself for the wallop of a big old relapse.

I think it was somewhere around the beginning of the second year into the trial that I got a cold for a couple of days and realized it came and went and I didn't even worry about an MS attack.

By God, this stuff has more power than I thought! It has the power not only to leap tall buildings in a single bound, but, more importantly, to force me to feel normal again.

The average person, health meter intact and never drained by a chronic disease, cannot realize what a precious gift they possess. They run around with a green, sparkly health meter over their heads never even aware they could ever turn to yellow or red. To have "normal" health is taken for granted.

To have something like Fingolimod put this green, shiny almost-as-good-as-new health meter over my head and allow me to run around (literally!) in this big video game that is my life, to me is just incredible.

Maybe it's got something to do with the other lifestyle changes I made at around the same time as starting the study (i.e. quitting smoking) and the fingo's got nothing to do with it? Who knows. Maybe the simple act of laying down the coffin nails and not cramming something lit on fire into my mouth so I could suck the soot and ashes of it into my lungs was enough to make the MS monster say "Ahhhhhhh!" and go back into his cave and hibernate. Maybe.

But I'm not willing to give up that little pill in order to find out.

I never thought when I got into this trial that I would become so affectionately and emotionally attached to an ugly Chinese fungus, but I have. The day this all ends will be a sad one indeed.

So I'm wondering... don't they need to do a reeeeeeaaaaaaaalllllly long term extension study (say, hmmmmm, til I die maybe? <--omg I HOPE that's going to be a really long time (frantically seeking wood on which to knock!)) to see how long this stuff can keep a person in remission? Come on! Nearly 3 years with no relapse? That's gotta be some sort of record. Well, for me at least I KNOW it is. The longest I went before that was the first 38 years I lived, but that doesn't count because it was pre-diagnosis.

I propose a study called "JERI" or Just Exactly how much time Remains In which patients from the phase III trial can go between relapses? (See, Novartis, you aren't the only one who can come up with those catchy trial names! I figured out how you do it and before that I thought it was cheating to use letters out of the middle of a word for your acronym).

Anyhoo, what better person to have in this extended, last until she's dead, Phase Infinity trial than the person's whose name matches the acronym? Eh, see? Great idea, no?

In case that idea never makes it to the board room, my only other option is to hope the FDA takes their sweet time. I can't bring myself to wish that selfish wish, though, because there are TOO MANY MSers out there waiting to quit jabbing sharp metal objects into their bodies repeatedly.

Ya'll are just going to love this therapy. You pop the teensy tiny capsule, way smaller than a vitamin, and take a sip of water. The capsule floats in your mouth and when you swallow you have to check around with your tongue to make sure it's gone. You never felt it go down.

It just doesn't get any better than that.

I'm praying I can go forever without another relapse on this stuff.

That said, watch. I'll be crawling back to this computer chair tomorrow to try and bang out H-E-L-P M-E-! on the blog.

Cringing and ducking, I'm outta here... to go have a NORMAL, BORING DAY. YAY! I've won the Lottery.