Friday, December 28, 2007

Local coverage of Fingolimod (FTY720)

I'm on an email list for an MS group spearheaded by my neurologist at Shands Jacksonville, and today I got an email with a link to a local news story about the clinical trial.

It was interesting to see another patient who's going through the same thing as I am and even better to see that he's receiving great results.

Here's a link to the story. I tried to embed the video but I'm no geek and kept getting errors. At any rate, my neuro (who's also my hero) is the doc in the video.

Click here for the video and story.

Monday, December 24, 2007

Fingolimod Christmas

Twas the night before Christmas
and all through the place
not a muscle was twitching
not the ones on my face

The numbness was gone
From my old achy calves
And I didn't take any baclofen,
not even halves.

I in my jammies and my
boyfriend in tow
had just settled in to watch
our favorite show.

When what to my wondering ears
should I hear
But my neuro's voice chiming into
my brain loud and clear.

"No Copaxone, no Beta, no Avonex now,
No Rebif or Tysabri for you, holy cow!
You'll make it on FTY720, you'll see...
You're nigh seven months being relapse free.

As dry leaves before a wild hurricane fly,
My pills swirled up, up into the sky.
Only to rain down around me in piles
Guarding my body from MS all the while.

Okay, so I'm making that part up,
it's true,
But I just can't believe this stuff
won't be approved.

Without one small twitch
of a side affect showing
I share with you on Christmas Eve
My spirits a-glowing.

If an oral medicine helps
slow the MS beast,
Then upon Fingolimod soon
we'll all feast.

To the top of my soap box,
to the top of the wall,
Now stay right behind me
and cushion my fall.

As I come back down dizzy
and legs all tuckered out...
I yell "Merry Christmas!"

and go back inside to drink a cup of hot chocolate, ponder why I haven't gotten the packages wrapped and why I have sat here at the computer so long writing some stupid poem that doesn't even follow the original correctly and makes no sense...

And now you can wonder why you bothered to read this.

Merry Christmas!!

Monday, December 17, 2007

Passing the four month mark

Yesterday marked the fourth month since I spent the day getting Randomized in this clinical trial of Fingolimod. That's one third of the way to completion and I'm already feeling wistful about the possibility that perhaps it will not win FDA approval for some stupid, unthinkable reason.

In the past Copaxone was my pacifier. Knowing I was taking my shot and doing all I could to ward off the MS boogie man. But the boogie man figured out that he was impervious to my Copaxone sword and he raised his ugly head repeatedly. Then I had to spit out my Copaxone pacifier (figuratively speaking) and reach for the bigger gun with heretofore unknown powers: FTY720.

Since brandishing this new shiny weapon the MS boogie man seems to be left scratching his head and laying down for a nap with seemingly one eye open just in case I put the weapon down and he sees a angle of attack left open.

I want this drug to be the Cloak of Invisibility or Invincibility for me and all who shall one day come to take it. I know there are lots and lots of MSers out there who have endured this disease longer than my single digit battle (9 years) and have lived through times where the only answer to the question of "What can be done?" was "nothing." Those people have my undying admiration... to have made it thus far and lived to tell the tale is a feat that I cannot imagine.

It's strange when you have a chronic condition from which there is no respite. You can't help but wonder what is in your future. Even though I have no immediate outward signs of disability, I think about what might become of me quite often.

The other day, my kitten hurt her paw. She put it somewhere she shouldn't have and ended up in pain. I don't know quite what happened, but she spent half the day limping. Other than the limp, she was the exact same kitten she's always been.

That got me thinking... how fortunate animals and small children are. They don't have the capability of pondering their predicament. They don't spend their time dwelling on "will this get worse?", or "what will I do if it does?". No, they seem to adjust beautifully to their new reality and move on.

I want to be like that. I want to move ahead, never look back, and face whatever becomes of me with an attitude of "I can handle this!" It would be a true blessing if I could.

I hang onto the positive notion that these drugs in clinical trials are going to work miracles for us all.

Have a wonderful holiday season....

I'll see you next year.

Friday, November 23, 2007

Thanksgiving wish

I know I'm a day late with a Thanksgiving message, but I was doing what I was supposed to yesterday -- enjoying family. I hope everyone had all they wanted to eat and that they were able to spend time with the ones who matter most in their lives. I did.

This year there are many things that I am thankful for. This clinical trial is very high on that list. I remember when I received my MS newsletter that had an article about the "upcoming trial" in their research section.

I read the article and it stated that FTY-720 would be pitted against a currently approved MS therapy. I was soooo hoping it was Copaxone that they were testing against. During that same month I got a flyer announcing that we would have a guest speaker at our support group meeting. The guest speaker would be none other than my brand new neurologist whom I had yet to meet.

I had lost my previous neurologist who had been with me since diagnosis after he had a stroke 2 years previously. When I learned that the man who would soon become my new doctor was going to be guest speaker, I felt I was destined to go. I took the newletter with the info about the clinical trial with me.

During his speech he got around to discussing his excitement over all the new drugs and treatments in the pipeline. He took the very same newsletter out of his briefcase and passed it around for all to see -- with the section about the FTY-720 trials highlighted. I raised my hand and asked what drug they were testing it against and the answer was the biggest letdown I had felt in a long time. "Avonex", he said.

I didn't ever want to take an interferon. I had heard horror stories about the side effects. Who wants to spend 3 days a week having horrible flu-like symptoms, not to mention the suicidal warnings about it? Speaking strictly from a position of one who has no experience with interferons and is terrified of any new drug, I thought "No thanks, I'll pass."

During that time I was walking with a cane and in the throws of an unrelenting relapse. I was miserable. I had to call the MS clinic and beg them to get me set up for a local IV infusion of high dose steroids to calm the flare because I just couldn't take the symptoms any longer and they didn't seem to be getting better.

A couple weeks later I saw the neurologist finally. He's a very busy man and seemed rushed. In his no-nonsense way, he noted that I was in the middle of a relapse and asked me how I thought the Copaxone was working for me. I had to admit that I guessed it wasn't. We discussed switching me to a different disease modifying drug. I burst into tears and said I didn't want to switch to one of the only alternatives which are all interferons. So, he suggested the trial. He said the beauty of it was that I had a 2/3 chance of getting the FTY-720 instead of the Avonex, but that either way I would be on SOME kind of drug that would surely work better than the Copaxone had been.

After hemming and hawing and meeting with the recruitment nurse, I finally signed on. That first day (Randomization Day) where I got the initial dose of the medicine was one of the scariest days of my life. I was so sure that, with my luck, I would get the Avonex and be miserable.

Now, 3 months into treatment and 6 months since the start of my last flare, I can honestly say that I thank my lucky stars that everything fell into place for me like this.

I'm not a church-going, bible-thumping kind of gal, but I do believe in God and that He listens. I look back on that time, floating in a sea of terror without a neurologist to throw me a life line, and I remember praying. I don't think the chain of events: getting the newsletter, having my new neuro speak at the MS meeting, or being invited to join in this study (for which my neuro happens to be lead investigator) was anything short of divine intervention.

I think He knew I couldn't take any more... and he threw me a life raft in the form of a little brown capsule called Fingolimod. Have I mentioned how thankful I am?

My Thanksgiving wish is that FTY-720 gets approved and all people with MS can have the choice that's been given to me....with the kind of results I have had.

Happy Thanksgiving to you.

Wednesday, November 14, 2007

Tag, you're it!

I can't believe it's been very nearly (in six more days) three months since starting the clinical trial. Everything I was so worried about before I first started seems a fading dream now. I can barely remember what it was I was fretting over. Side effects, mainly, no doubt. I hate drugs and won't even take a Tylenol for a headache unless it gets incapacitating. Did I mention I'm a hypochondriac? It is especially pronounced when taking new meds...I read the insert and find that I am having every possible side effect known to man, and coming up with a few of my own.

I look back on where I was, in the middle of a flare-up, four months ago, and I see I have come a long way. I was having a terrible time physically. Using my cane to waddle about on tired, rubbery, numb legs. But I think the main debilitating symptom was my state of mind. It's like my brain short-circuited and I was in a constant state of panic. I ended up more than once (actually 3 times) at the ER having what I was sure was a heart attack in 2 cases and an adverse event to medication on the 3rd....only to find out I was hyperventilating and having a full blown panic attack.

The doctor wanted to start me on an antidepressant (the one that's got the commercial of the little blue bouncing cartoon pill) but I was too stressed out to take it. I kept my Xanax handy like a life ring on a sinking boat.

But then I started this trial and after the fear of the unknown was conquered, I have settled into a comfortable routine. I have regained my sanity (or what I know as sanity -- if anyone were to try my brain on for size they'd probably beg to differ about what sanity means). And something amazing started to happen. My body slowly started to cooperate.

I was reading a post on (a fantastic group of MSers who have come together to share experiences, knowledge, and camaraderie) questioning why MSers can't hop. I read it and thought "what?! I can hop!" so I got out of my chair and tried it. To my amazement, my feet would not come off the floor no matter how much I tried to make my voice sound like Captain Kirk giving the order! "Jump!" I shouted. But my legs yelled back "I'm givin' 'er all I've got, Captain! She's not going to jump."

Well, that ticked me off to no end. I mean, I can understand the inability to be a cyclist or a marathon runner, but a little hop?? Come on! It's not that hard, even babies can do it. So that's when it began.

I forced myself to keep trying. At least once a day (always when nobody was around)I would stand up, bend at the knees, and will myself to spring high into the air. I never actually got my entire feet off the floor, just the heels would come up a little and want to catapult me forward. Having nothing better to strive for in my life at the time, I just kept at it. This went on for a week or so and I finally got both feet to come off the ground. I was giddy with excitement and wanted to show someone. I took my 9-year-old outside and said "Stand back and watch this!" When he saw me hopping he screeched and squealed and got all giddy with me. He said "Mom!! You can hop!!" and that was the best feeling in the world.

I didn't stop there, tho. I figured if I could force myself to hop even tho I had apparently forgotten how temporarily, then maybe it would work with running.

I have tried over the past several years, to run. It's hard to explain what it feels like to have forgotten how. I didn't think it was really that I physically could NOT run, but when I tried there was this hesitancy. I'd lift one leg and try to push off with the one in back like I remembered doing all those times as a kid, but...nothing. Three gigantic Frankenstein-like clumsy steps was all I could manage.

One month later, after trying day in and day out, I again summons my son to the back yard. I felt almost like I was his age again judging by how excited I was over something so silly....

I said "Come over to this tree and stand right here." I drew a line in the sand with my toe. "Don't cross that line, okay?" He just nodded and looked confused.

"I'm going to stand behind that line with you and when I say 'GO!' we're going to race to the fence over there."

Now the fence is fifty feet away and my son said "oh, su-u-u-u-re, Mom" like he was placating a crazy person. But in another 3 seconds I had counted down and shouted "GO!" and I was leaving him in my dust.

He was dumbfounded for just long enough for me to get a head start. Then he sprang into motion and quickly caught up, jogging alongside easily as I huffed and puffed and forced my feet to plod along with all my might at what felt like it should surely be superhuman speed.

We raced again 2 more times, each time he beat me easily. Then it was time to go back in and rest. I felt like I had just done the MS150 or something. He wasn't even out of breath. He gave me a big hug and said "Mom!! You RAN! and I'm so proud of you!"

Next time we went outside he tapped me on the shoulder and took off running shouting "Tag! You're it!" I just bet he's wanted to do that with me his whole life. It made me smile and take off after him. I never did catch him, but maybe if I keep practicing while he's at school I can surprise him again.

I don't know what it is. Maybe it's the Fingolimod, maybe it's God cutting me some slack, maybe it's just the change in attitude. Whatever it is, I feel better every day.

I thought I would share that story because so much about this disease is depressing and leaves you forlorn. A story of accomplishment can be uplifting and the positive energy can be contagious. Try doing something you thought you no longer could. You might just surprise yourself.

Sunday, October 28, 2007

Update on the clinical trial...

I know I don't write as frequently as I used to when the trial was all new to me, but I'll try to pop in now and then and update those of you who have been loyally following along.

The 20th was the two month mark and I have to say I have been feeling great. The ONLY possible side effect I have experience happened to me yesterday at the grocery store. I was in the meat department and suddenly felt like my heart was pounding. True, I had walked all over the store up to that point and I'm not as young as I used to be, so my heart rate probably was up a little.

But I felt dizzy and a little nauseated. I put my head down to make the swimming feeling go away. When I looked back up the whole grocery store seemed filled with white haze. I blinked several times and it finally went away.

Now, I'm no doctor and don't even play one on TV, but I'm guessing this may have something to do with the medication. At any rate, come tomorrow morning I will be calling my study nurse to let her know so they can document it.

I even still feel like my heart is beating too fast today but can't decide if that's just my brain telling me to freak out or if my heart really is beating faster. I almost took a Xanax just to see if maybe it was anxiety messing with me, but decided against it.

It's not like I can go to my local ER and say "um, my heart's beating funny and I've been taking these. Don't bother looking them up in your PDR because it won't be there." That would surely send the local ER doctors into a panic of their own.

I guess when you offer yourself up on a platter to Science you have to be prepared for Science to poke you a little.

Hopefully it's nothing and I can keep taking my little brown pills. I'm on month FIVE with no relapses!! For the first time in 2 years I made it past month three.

Saturday, October 20, 2007

Full Circle

More than 20 years ago I was having issues with my arms. They would fall so sound asleep at night that to touch them felt like touching someone else. I was more than a little annoyed by it and eventually a girlfriend convinced me to see her doctor. THAT was a mistake! I spent 10 minutes telling him about my tingling and numbness during the day and the problems I had with my arms at night.

He looked me straight in the eye and without having even asked me to say "Ah" he delivered the staggering diagnosis. "You have MS and eventually you will end up in a wheelchair. There is nothing that can be done."

I left his office in tears and went straight to see my mother who worked in the Medical Records department of the hospital. She got me an appointment with a well respected neurologist who quelled my fears by doing a thorough neurological exam and concluding that my problem was carpal tunnel syndrome.

I went back to work and told my boss that I could no longer type constantly and I was assigned different duties. I never gave MS another thought and my arm issues resolved.

Now, fast forward 20 years. I have been having issues with my left hand for the past week. My thumb, index finger and middle finger are all tingly and numb. It's not a constant thing, however, like most symptoms are when I'm having an MS flare. For instance, when I go to bed and get a good night's sleep, I awake with no numbness or tingling. After spending time at the computer, however, the symptoms return.

Yesterday was my 2 month checkup in the Fingolimod trial and I had an appointment to see the neurologist. We sat down and discussed how things were going and I mentioned the numbness and tingling and that it comes and goes. He did a lot of strange things to my hands and wacked me with his little hammer in quite a few places and said "I'm going to order a nerve conductivity test to verify what I suspect." And I asked "what's that?"...

"Carpal Tunnel Syndrome," he said, to a patient that couldn't have been happier to get such a diagnosis. It means I'm not having a relapse of my MS right now and that's a wonderful thing. It's funny how, after 9 years of dealing with symptoms that mean my MS is getting worse, finding out I have something like Carpal Tunnel is a cause for celebration. It makes me feel like a normal person.

So I've come full circle. First I'm told I have Multiple Sclerosis only to find out it's Carpal Tunnel. Then, years later, I go to my neuro fretting that I'm having an MS flare, only to find out once's Carpal Tunnel.

Sunday, October 14, 2007

Great News!

Since things have been going so well lately, there's nothing exciting to report and thus the lack of recent posts.

I got up this morning and checked my Google homepage which I have set up to show me the latest feeds in Multiple Sclerosis news. Much to my delight there was an article about Finglimod (FTY-720) in today's news!

It seems that clinical studies have now shown that not only does Fingolimod slow the progression of MS but also aids in repair of previous damage to the nerves.

Full story is found here:

EAST HANOVER, N.J., Oct. 12, 2007- New preclinical data presented at European Committee for Treatment and Research of Multiple Sclerosis (ECTRIMS) in Prague suggests that FTY720 (fingolimod) directly reduces neurodegeneration and enhances repair of the central nervous system (CNS) damage caused by multiple sclerosis (MS) by interacting with sphingosine-1-phosphate receptors (S1P-R) expressed on brain cells. This mechanism of action may be in addition to the established anti-inflammatory role of FTY720 that is mediated by the reduction of inflammatory immune cells, called lymphocytes, from reaching the brain.

To me that means a world of hope. Not only does it mean no more shots, and a strong ally in the form of a drug to help slow progression, but now it may also mean reversal of damage. How wonderful! There is some hope that maybe my legs won't feel like they're on fire for the rest of my life.

I sometimes complain and often fret over having MS and what it's done to me, but when I stop and think about it, I've really had it made. I could be so much worse off after nearly 9 years, but to look at me today you'd never know there was anything wrong.... which is why I sometimes hesitate to use my blue parking permit. I hate the stares of people trying to shame me when they see me get out of the truck and walk -- as if I'm as normal as the next person -- into the store. What they don't bother to do is follow me for 100 feet and see that I'm no longer looking so "normal" any more, but I'm now dragging my feet and leaning on the shopping cart.

But that's another story. My point is that I have a lot to be thankful for. First and foremost I'm glad that if I had to have this terrible disease, at least I got diagnosed during a time of hope, when so much is being learned and so many breakthroughs are being made in medicine.

I'm especially thankful to be able to say I'm doing my part in helping to work toward a cure. I know fingolimod isn't a cure, but it's a step in the right direction. To toss the needles of MS therapy and reach for the little pill is, well, nothing short of a miracle and the next best thing to finding a cure.

So to all you researchers out there who may wonder on occasion if you chose the right line of work, I want to say YES! YOU DID! and please know that there's a world of MS sufferers out there who thank you as much as I do.

Thursday, September 27, 2007

Holding my breath

My son had to go to the doctor the other day. He's got this cough that just won't quit after getting a viral infection 10 days ago. Since he's got asthma, I decided to err on the side of caution and take him to get checked out. Turns out he's got an infection in both ears and had to start on antibiotics.

As we were driving home from the doctor's office I noticed that my throat felt hot and like it was scratched or something. I haven't been sick with a head cold in so many years that I didn't recognize the initial symptoms. By midnight there was no ignoring the symptoms, however. My throat felt like someone had poured acid on it and then rubbed it with sandpaper. I couldn't drink, breathe or swallow without major pain.

Since I never really asked the study nurse about possible drug interactions and the only thing we talked about was taking tylenol or advil, I wasn't sure if I could take over the counter head cold medicine. I toughed it out until morning when I put in a call to the MS clinic.

Turns out the only thing they don't want me to take is another disease modifying drug for MS or heart medicine that might be prescribed by my primary care doctor. They want to know about stuff like that.

So I took some Benadryl and slept all day yesterday. Even though I am feeling quite a bit better today, I'm holding my breath...waiting for the other shoe to drop.

In the past, it seems like every little thing that happened to me ended up sparking a relapse and landing me in the hospital. Something as simple as a bout of constipation once earned me a 3 day trip to the hospital with a bonus 2 months of recuperation.

So now the real test of whether or not the Fingolimod is doing it's job will be if I can make it through this viral infection and come through it unscathed and feeling normal. So far so good...but I'm holding my breath.

Friday, September 21, 2007

1month checkup

I spent yesterday driving to Jacksonville for my one month checkup.It was sunny on the way up, sunny on the way back and only rained once -- when it poured cats and dogs as I parked at the hospital and made my way inside. Nice.

I had another Pulmonary Function Test which the tech said was "normal" again, just like the first one. Then I had another EKG which I didn't find out the results of, and more blood drawn.

I was supposed to have seen the neurologist this time but he was swamped with patients and between him and the nurse, they decided I could see him in 2 weeks when I come back for my next ophthalmologist appointment.

The way I'm figuring it, if there had been any issue with the PFT or the EKG, I'm pretty certain the doc would have made a point to see me. If he can brush me off for another 2 weeks I must be doing okay.

I got new shots and a new bottle of pills, so I am good to go.

I still awake every morning holding my breath and waiting for new symptoms to hit me. So far it's just the same old stuff (some days more pronounced than others) but nothing new.

I really wish I could let out a huge sigh and relax and just enjoy being alive. There is just this constant "what if" feeling in the back of my mind and I'm always uptight. Geeze, life is one big "what if"... I really should just count my blessings.

#1 on the list is that the 1 month checkup was unremarkable and routine. That's a big blessing, right?

Tuesday, September 18, 2007

Week Four of the Study

Gave myself the 4th shot yesterday a.m. and once again, nothing. I'm continually amazed that a needle that long doesn't hurt at all when jammed to the hilt in my thigh. No pain, and no kind of reaction either.

I did have a headache last night, but I think that's from the weather. Whenever it's about to rain and the barometric pressure drops I get a headache. Last night was a doozie, but I still didn't take anything for it. That's the kind of person I am. I'll suffer through a headache without realizing I really don't have to if I'd just take some ibuprophen.

I've never been much of a fan of medicine. I didn't do drugs as a teenager and no matter what the legitimate reason for having something prescribed to me, I'm always leary of it. I had a prescription for Zoloft to help with the anxiety but was too anxious about possible side effects to start taking it. *sigh*

It's a cruel sort of irony that someone who is so afraid of medicine should get diagnosed with something for which any number of symptoms could require you to take a rainbow assortment of pills -- and most of those have side effects.

So, other than the headache I seem to be fine and there's no new hint of a flare with my MS, so whatever I'm on -- Fingolimod or Avonex -- it seems to be doing its job at the moment.

Saturday, September 15, 2007

Welcome members

If you are reading this and you have come from it's no doubt due to all the back and forth posts made today that stemmed from an original post on your website that linked to my blog. I found the link by tracing the number of hits to my blog back to the post on your site.

I went there today and signed up so that I could provide information about Fingolimod as one poster had asked about it. I didn't realize I was wrapping a hornets nest around my head. I was called a liar by one of the first people to respond and called out on the carpet by someone about my casual remark about the recent "study" of only 21 people that showed cessation of Tysabri may have something to do with an increase in the number of subsequent relapses in patients with RRMS. I agree, I should have left that info out all together as it had nothing to do with the info I came there to provide and I don't take it, or know anyone who does. Sorry for that! Sincerely.

That said, I didn't appreciate being called a liar. Someone on that board insisted that all Phase III studies of Fingolimod are 24 month studies. They are wrong and I should know that better than anyone merely investing -- I'm the one who's got the schedule of testing and the protocol for the next 12 months. I know at the end of the 12 months, if they are going to continue the study, I will have the option of staying in, but it's for 12 months. NO LIE.

I'm not an investor, I'm not a pharmaceutical company, nor am I a neurologist. I'm not pretending to be. What I AM is a person who has had relapsing/remitting Multiple Sclerosis for nearly nine years and I am currently in a clinical trial for a new medication. I know better than anyone else what it's doing for me. On that I am an expert. I was just trying to share. I didn't know it would explode the way that it did... I should never have posted.

If you're here because you are interested in the topic, please stick around and read the whole blog. There's lots of interesting tid bits in here.

If your here because you came to see if you could leave a comment and bash me, well, you're going to be disappointed. I changed my settings earlier and you can't do it any more. It seems some really childish people have way too much money in this world if they are investors who waste their time bashing some poor girl on her measly blog.

Now, back to my regularly scheduled witty self. For my regular readers, I promise I won't stray into that arena again. :-) -- the rudest place on the net!

I saw by my stats that I had a LOT of hits to my blog from a place called "". Curious, I went to see why. Someone had posted a link to my blog as if to share their prospecting find. Someone replied to that post questioning what Fingolimod was.

I decided to share my knowledge from the unique perspective of someone in the clinical trial only to be called a liar. The very knowledgeable folks at this investment site seem to know for a fact that all phase III trials are for 24 months. Hmmmm guess I read my informed consent wrong. It details specific tests and expectations only covering the next 12 months.

I go back to see if there are any replies and find that some NICE person says they want a link to the trial info. Someone else, (NOT SO NICE) decides to provide a link to the wrong trial and quote the trial as saying it's 24 month. Well, gee... YOU'RE RIGHT! That trial IS 24 month, but it's not the one I'm in. Duh!

Man, I would love to sell you some waterfront property out in AZ. The way you do your research is impeccable. (That's scarcasm, again).

Maybe I'd better contact my neurologist who is the lead investigator for the the North Florida arm of the trial. He should know that the investment people over at say it has to go on for 24 months. That may throw all the time line off.

If you came here from investmentvillage and are reading this, GO AWAY. You people know everything and don't need anyone telling you any different. Don't waste your time reading a first hand account of someone taking the medication because it's all lies. I just like to spends a few months dreaming up fake scenarios about the tests and everything to amuse myself.

If you are from investmentvillage and don't concur with your rude board mates, then my apologies. I was only trying to offer information that someone seemed interested in getting. Because it didn't come from another investor, I guess it's no good. Sorry.

If you are one of my usual readers, please ignore this post. I will return to my regularly scheduled program shortly. :-) Just had to get it out of my system. I'm a shy, nice person who was only trying to make friends and supply info to some people who came to my blog. I didn't know I was going to be called a liar and not even get a nice "hello and welcome!" first.

Pinch me, I'm dreaming

On my Google homepage I have customized it to display current MS news feeds so I can stay on top of what's happening around the world that might have an impact on my health. Today one of the links was to this article:

Novartis completes agreement with Bayer Schering related to Betaseron rights and manufacturing

The way I'm reading it is that Novartis, the old sly dog, bought the parent company of the people who were making Betaseron back when it was the MS drug du jour. That way they made the profit.

Well, now Novartis is dumping Betaseron on Bayer for a cool $200,000,000. They will no longer reap the profits from the sales of this drug. "Why would a company as big as Novartis make a move such as this?" you might ask. It's simple! They are expecting Fingolimod to be the new Gold Egg laying Goose! Why bother with the manufacturing of an injectable when it's going to be obsolete in another year or two and it's so much cheaper to manufacture pills?!

That single move by the pharmaceutical giant Novartis has left me more confident about the outlook for Fingolimod than and results of earlier trials have. Not to say I wasn't impressed before this, but why else could they be dumping Betaseron? It was one of the first MS drugs used in an attempt at disease modification. Many people with MS are still on this drug. It can only make money for whoever owns the patent and manufacturing rights. UNLESS it's become a dinosaur. Why dump one disease modifier that's already FDA approved unless you are sure about the new drugs coming out?

Maybe I'm reading too much into this, but if I am, I'm happily wandering in my own dream world, so please.... Shhhhhhh! Don't wake me up!

Tuesday, September 11, 2007

National Multiple Sclerosis Society's commercial for raising awareness

Thanks to Annie, who commented on my last entry, here's a commercial I thought I would share with you:

Monday, September 10, 2007

Hey Novartis! Some name suggestions for you!

I just can't see an MS commercial on TV with beautiful people engaging in idyllic scenes of active living with the words "Fingolimod : Take your life back!" on the screen.

You guys at Novartis are great when it comes to making the medicine do what it does -- I'm not questioning you there! It's just that, let's face it, you don't have the best marketing sense, in my opinion. I mean, look at your pharmaceutical company's name. Novartis?? That sounds like the inflammation of some little known internal organ, sorry.

So, I've decided that I will lend you my many years of marketing expertise that comes from owning a printing and sign business and helping my customers think up catchy tag lines. Don't worry, I won't charge you (unless you actually use it and then this blog entry becomes Exhibit A in the lawsuit). Anyhoo...I've got a few names you could try.

Remember, you're competing with trendy names like "Tysabri" whose nickname has become "Ty" and everyone loves to say it. It's got to be something trendy, refreshing, and gives a hopeful feeling to those taking it without in any way implying a shred of hope. hmmmmm

MS-be-gone is out. Too much of an absolute statement however much we with MS would like to buy into it. I see lawsuits over that one.

Brighter Tomorrow has potential although it's currently being used as a name for an MS grant program I think. But what if we shortened it? Brittom? or Britrow? No... it loses it's positive impact and sounds like something you might find when cleaning a fish.

I know, how about we go back to the Chinese roots of the fungus? Maybe there's a name there to be had. Then again, considering the Chinese angle (in the minds of Americans, Chinese = recall) and the fungus angle (what's catchy about a fungus... unless it's the fungus you are catching?)

How about "Nerve-On, applied directly to the spine!" No, those commercials are so annoying.

I'm going back to what sounds good. Something that smacks of "vitality". Vitameatavegamin is out, I guess.

Seriously, tho... I like these:

Gold Finger (because that's what Fingolimod sounds like to me and it reminds me of James Bond).

Vitalease (combining "vitality" with "ease" as in "ease of movement".)

Proreverse (as in "I'm all for a reversal of my MS damage!")

Jerimod (just to throw my name in there for posterity.)

Anyhow, all I'm trying to do is show you big guys at Novartis that if you are thinking ahead in a positive fashion to the days after FTY720/fingolimod is approved, then you have to get on top of this now. Give us a name we'll be able to pronounce and be proud to say when someone asks us what disease modifying drug we are taking for our Multiple Sclerosis. Please don't keep the Fingolimod label, alright?

Thursday, September 6, 2007

If this gets approved, I'm in heaven!

I was just thinking about how nice it is that I only do a shot once a week. I'm sure those of you who haven't had a shot since getting their last boosters as a child would beg to differ, but for people with MS, shots are a part of reality. A necessary evil.

Since getting diagnosed in '99 I have had to stick myself on a daily basis (well, okay, my family knows that I fell off the shot wagon for a while and then got back on). Copaxone was the MS fighting elixir of choice. A tiny needle the goes only into the fat just beneath your skin. But the medicine it delivered was like battery acid. The stuff burned and there's just no way of getting around it.

At no time in the history of MS medications has a person been able to take a pill once a day that is designed to modify the course of the disease progression... until now. True, I can't pull the sheet out of the box and read about side effects or what not to take it with, etc., but I take my one pill a day and that's it. Well, except for that once a week shot, but who's counting? I do it Monday morning and by Monday afternoon I'm over it. It's done, gone, forgotten. For a week!

From what I have read recently, Fingolimod may even be able to repair previous damaged caused to nerves by multiple sclerosis. If that's the case, not only should I have fewer relapses to look forward to, but maybe I'll get some feeling back in my feet and not be quit so off balance.

It will be a sad day if, at the end of this study, Fingolimod doesn't get FDA approval. I will miss my little brown pill and all that it represents to me as a future that looks so bright.

For now it's looking good. No side effects and no relapses so far. You would probably say that two weeks isn't long enough to say whether it's making a difference in slowing the relapses, but consider this: I have been having relapses on a continual basis every three months for the last two years. I couldn't catch a break. Just when I would start to heal from one flare, another one would wash over me. Like an ocean of symptoms that threatened to drown me, I could get no relief.

My last round of steroids (which is all they can do for you to quiet down an acute attack) was back in June of this year. This is now September and I am having no signs of a new attack. All is quite on the MS front. I hope it stays that way, and with this medicine I'm pretty confident I will.

How nice it is to finally be able to get back to the business of living. Just having a regular life without constantly being nagged by your body that you have a disease is a nice thing. If Fingolimod gets approval I will be the happiest woman on earth. Well, the only request I would have would be to give it a jazzier name. Something like "Gold Finger" maybe? James Bond fighting M.S. -- I like the visuals.

Saturday, September 1, 2007

Worrying myself sick

Is it really possible to make imagined things become real if you really, really believe in them? It didn't work for me when I tried it with Santa Claus or winning the lottery. But I do feel there is power in positive thinking.

For instance, I'm walking just fine these days and it is because I am doing well with my MS... or at least I think I am. Could it just be that because I don't have all the facts and I only perceive that I'm doing well that I am a walking miracle? If so, I don't want to know the results of all the MRI's I have had lately.

It could be that the reason they've been "lost" or never received by my new neurologist isn't due to miscommunication between hospitals, but rather I am a curiosity being studied by a team of doctors. Maybe they have seen my MRI's and know that I should be a vegetable confined to a bed, but realize that because I don't know this, I am still up and walking.

In that case, I don't want to know. I believe in the power of positive thinking because I have seen the power of negative thinking. I do it to myself all the time. I can talk myself into a panic attack quicker than you can say "OH NO!". And I even have this detached, analytical part of my brain that sits back saying "there you go again... you brought it on yourself."

If it's true that negative thinking can effect your health, then why can't positive thinking? Today I'm practicing "The Little Engine That Could" alternative medicine. I am going to feel better, and thus BE better, because....

I think I can, I think I can, I think I can.

Just between you and me, I'm sick of worrying myself sick and I think I'm going to give it up as a hobby altogether. If anyone has any great links about the power of positive thinking that they'd like to share with me, I'm all ears. Please post them as a comment.

Monday, August 27, 2007

Is it Fingolimod or is it Avonex? Only the scientists know for sure.

I'm not sure I'm taking to being a lab rat too well. It was okay for the first week. I was skating through life just taking my little dinky capsule every day and managing just fine.

Then today was the dreaded Shot Day. I had to get over the fear of the honking big needle and just do it, like Nike says. I was up at quarter to five for some unknown reason and sat around thinking "well, four more hours and I'll have to do that shot."

Then I decided that was stupid to do a count down and get myself all worked up, so I got the shot out of the fridge and went ahead with it. Everything went exactly as it did last week when I was a spectator while my nurse gave me the shot. Smooth as silk, the needle slid right in. I didn't feel a thing.... It was no biggie at all.

Then about a half hour later I started feeling a little dizzy. I was at the computer and sometimes it will do that to me, so I got up and walked away from it. Next thing I know I'm feeling nauseated as if I were sea sick.

Up until this morning I was positive I was on Fingolimod. Now I'm not so sure. Yes, my heart rate did drop on the initial dosage, so I probably am, but what's the deal with how I'm feeling today??

One thing that's hard about having a chronic disease like MS: every little thing that happens to you, you want to attribute to MS or the meds you are on. Could it be that I'm experiencing... a stomach flu? I often forget that I'm still prone to all the normal stuff that health people have.

I'm feeling better now, 8.5 hours after the shot. I'll know for sure next week if I get sick on Monday again.

I'm not so sure I like not knowing what I'm putting in my body. I thought I would read the enclosed pamphlet that came with the Avonex to see what the side effects are. Turns out that great big piece of paper (that's folded in half at least 8 times despite what MythBusters says is the absolute maximum possible) is only the instructions for administering the shot -- written in about 13 different languages.

Apparently when you are in a clinical trial even the FDA approved stuff that you take doesn't come labeled and packaged the way Joe Customer would get it.

I'm so glad I restrained myself and didn't go running to the local ER with a fist full of strangely labeled weird drugs they have never heard of. I"m sure it would have blown their minds. No, instead I got out a pocket notepad, and, like any good participant in a science project, I recorded my symptoms and the date and time. I'll let my neurologist make heads of tails of all the chicken scratch when I go for my 2 week check up. That's why he gets the big bucks.

Saturday, August 25, 2007

My Daily Pills

Just so you can get an idea of how really small this pill is, here's my daily handful of the pills I take.

Starting from fingertips down, Fish Oil, Centrum multivitamin, Calcium with D, B-12, another calcium with D, and Fingolimod. It's the tiniest thing I have to swallow. I often gag on the calciums and the daily.

Someone else in the trial said they had no side effects from either drug (Fingolimod or Avonex) upon initial dose and she wanted to crack open the capsule and see what the stuff inside tasted like. Not me! It's probably ghastly and I don't care to know. Besides, I'm pretty darn sure my pills aren't placebos.

Friday, August 24, 2007

When I got marked down as damaged goods.

Life is divided for me into 2 phases. Before MS and Since MS. I remember before I was diagnosed or had my first symptoms, if I met or heard of someone with a disability it sort of creeped me out. Not to say that I am without compassion because that (among other things) is something I'm full of. It's just that in having to recognize a disability in someone else, I am forced to see the unpleasantness that can be part of life. I always viewed the disabled with a certain fear and sadness, and inevitably the phrase that would cross my mind is "Whew! Glad that's not me!"

Then, on cold winter morning when I got out of bed and my feet hit the wooden floor, I didn't feel a thing. It wasn't cold. Or rather, it was cold but I couldn't feel it. It was at that defining moment that I moved from being healthy observer of the disabled to "one of them". I wasn't disabled, I just went to that side of the spectrum from the healthy-without-a-care side in that moment.

Naturally, I blew off the numb feet as "oh, they fell asleep" and then later, as the numbness crept up both legs to settling at my waist, I thought "hmmm, pinched nerve?". I went to a clinic (because a: I had no doctor and b: I had no health insurance). The doctor looked me over and had the lady in the office set me up with an appointment to see a neurologist.

Meanwhile, my legs are solidly numb and it now feels like very step I take is through mud. It was taking all my energy to get around.

After lots of tests and a 3 day vacation in the local hospital getting and IV full of steroids, my doctor pronounced that I had "Transverse Myelitis". He said that the stomach flu I'd had 3 weeks prior had somehow crossed the blood-brain barrier to damage my nervous system.

Three months later I was back in his office with new symptoms and I got my diagnosis of Multiple Sclerosis. Darn, now I was one of Jerry's kids. That's how much I knew about MS, I had it confused with MD.

I learned, tho. I read everything I could on the subject.

Thursday, August 23, 2007

Fingolimod Facts

I guess since there's basically nothing in the way of side effects to report, I need to dig up some Fingolimod Facts to bide my time until I can report on my first update neurologist visit.

Fingolimod is a still-investigational drug that, given orally, acts as a superagonist to sphingosine-1-phosphate (S1P) receptors on the surface of thymocytes and lymphocytes, causing them to be sequestered in secondary lymph organs.

What that means is the misbehaving T cells that are thought to be the attackers of the myelin in MS are not allowed to come out and play, but kept in the lymph glands until needed for a real (as opposed to imagined) invader's attack.

This reduces the overall number of circulating lymphocytes available to mount an autoimmune reaction to the myelin sheath surrounding axons in MS.

These lymphocytes are apparently a lot like undercover cops dispatched at a concert... going around acting all normal and blending in until a problem arises. Then WHAM! they are there to attack the rioters (myelin). Unfortunately, these lymphocytes are like bad cops ... they react first and ask questions later, beating the myelin into submission without asking the axons (the nerve cells) if they were buddies with myelin or not. These bad cop/lymphocytes can get so carried away that they not only beat the myelin to a pulp, but also give the axon itself a pretty good working over too.

Fingolimod is going to keep the bad cops sequestered at the station on desk duty.

FTY720 is a chemical modification of the ISP-1 metabolite of the fungus Isaria sinclairii (Dong Chong Xia Cao).

In other words, it comes from a Chinese fungus. With all the recent toy recalls maybe I should rethink ingesting a fungus from China. hmmm

Fingolimod was first used in clinical trials with transplant patients to see if it worked better than conventional therapies for reducing rejection.

Apparently the final conclusion was that it was no better than what the doctors already had to work with.

So, in researching facts to add to this post I have come to the startling conclusion that I really don't know a whole lot about this little pill I'm popping every day. Of course I don't know a whole lot about my vitamin and I take that. FTY720 has shown me about the same number of side effects as my vitamin, too. Zip, zilch, nada, nyete (okay now I'm just showing off).

Every once in a while I think "ooooo, my hands are getting sweaty and my heart is beating a little fast and I feel like I can't catch my breath..." Then I realize that's not a side effect of Fingolimod; I'm having a stupid panic attack. Then I chill out and I'm fine.

Tuesday, August 21, 2007

Photo montage of the clinical trial so far

The mystery medicine is in my system

Yesterday was the day. I had the pleasure of having to get up at 5:30 a.m. on the next to last day of summer so that I could drive for 2 hours through morning rush hour traffic to go take a pill and get a shot. I can't tell you how thrilled I was.

My sister offered to go with me, so we made elaborate plans about what to eat and which movies to watch. She brought all the makings for subs in a big cooler, I brought drinks in a small cooler.

When we arrived there was a flurry of activity; my blood pressure, pulse and temperature were taken along with my weight and height. Then I was covered with sticky pads containing leads for hooking up to EKG and Holter monitor. Fortunately, then nurse told me, they just recently got the double lead pads, otherwise I would have had to wear twice as many sticky pads.

After all the prep work was done, all there was to do now was wait for the nurse practitioner to arrive. She got stuck in Jacksonville morning traffic as she had to wait for the stop and go of passing by two fender benders. I wasn't complaining and sat patiently, contemplating all the wires hooked up to me and wondering just what I was going to "feel" when the new meds hit my system.

When she got there, we made a little small talk -- she's the same nurse I have seen on various office visits to the clinic, so we already know each other. Just having her smiling face there, reassuring me, was enough to get rid of the butterflies. She looked my EKG over carefully (turns out she has 11 years experience in the cardio field and that's why she was asked to be in on this study). She said I had a very normal heart. (YAY!) Then all that was left was to choose my poison.

I got to choose which to do first, so I figured the pill would be easiest. Everyone knows how to swallow a pill. She had to open the medicine bottle in front of me -- I guess so I know I'm getting the study drug and not a Tic Tac or something, but am I to know? I mean, look at the label. Would you understand it? Besides, how do I know this particular bottle is the one the pharmaceutical company wants me to take? I might be getting 2 placebos or 2 active drugs for all I know. But I'm not going in that direction because it could drive me crazy and that's a very short trip.

I trust the people I'm dealing with in this study and I'm sure they have checked and double checked that they gave me what I'm supposed to get.

Anyhow, I look in the paper cup when she hands it to me and am pleasantly surprised to see an innocuously small gel cap that was brownish red in color. I pop it in my mouth, take a swig of water and it washes down without so much as a bump into the back of my throat. My first thought was "oh no. no turning back now...what have I done?" Then that feeling passed and we were on to the more important issue. The Shot.

I was scared to death of this part and I know it's stupid and silly -- after all, I have given myself shots on a daily basis for many years -- but this needle looked really huge in that video I posted a couple of days ago.

She gets the box of medicine and very unceremoniously rips it open. Out comes the pre-filled syringe and the needle, wrapped in it's own little package. She asks me where I want the shot delivered. I say "what are my choices?" Either thigh, either arm, or butt. I wanted to see what was going on and I'm not going to be giving myself a shot in the butt or arm, so thigh was my choice.

She tells me the shot should go in the outter half of my thigh, somewhere in the center 1/3. I didn't know I was going to have to be good at fractions to be able to do this, but I listen to her and nod like I'm understanding it all. She wipes with alcohol, and the next thing I know I'm seeing that big needle sink into my thigh like I was the Pillsbury dough boy's sister. It went right in with no effort at all and I couldn't even feel it. She pushed the plunger and I braced myself for a sting or burn as the medicine hit my muscle, but ... nothing. It was at that point that I'm thinking "hey!! I bet that was just water!!" which means I can quit worrying about Avonex side effects and worry about Fingolimod ones.

With all the drugs in my system and me all hardwired to a Holter monitor strapped to my waist, I go off in search of my sister. She left the room when she suspected the needle might be coming out. She's a big wuss and can't stand the sight of needles, but I love her even so.

She had meanwhile been tracking down the place where we would be spending the next six hours for observation. She scored us a conference room with a huge long table and fairly cushy "exective" chairs that swiveled and leaned back the way exectives like to do.

First thing I did once they left us alone was to sit at the head of the table and say "I suppose you're all wondering why I called this meeting today." I couldn't help myself -- I've always wanted to do that. My sister wanted to alter the words on the dry erase board that were all neurological terms. She wanted to misspell them so some doctor got embarrassed next time he saw what he had written, and then spend all day trying to recall why he didn't catch that when he did it.

When we were sufficiently amused, we tackled the TV. I came armed with all my movies and decided to watch "Holiday" first. I popped it in and the day of waiting began. An hour later the nurse came in to take my vitals. I made the mistake of saying "you don't have to tell me... I'll just peek over your shoulder while you write." So she covered it up. I still didn't have any fever, chills, body aches that are common with Avonex, so I was just waiting. With all the research I had done on the side effects of Avonex, I never did pay attention to how quickly they come on, so I still had no clue which medicine may have been real.

Hour after hour went by, pretty uneventfully. At hour 3 I told the nurse that I was sure I was on the Fingolimod because I wasn't sick yet and my heart rate had dropped from 80 to 64 (the reason for all the heart related testing since Fingolimod can drop your heart rate by up to 25 beats per minute upon initial dosage). She laughed at me and took my vitals. She held the clipboard so I couldn't see what she wrote, but I saw her hand swirl in the motions necessary to write a "6" and "4". "Aha! I knew it!" I said and she laughed.

We made a couple of trips to the parking lot for the retrieval of various things. On the one trip we made together, to get the coolers, we caught the same elevator as Dr. Kantor, the lead investigator in the study. I tell him I'm there for randomization and he said he knew that. Then I tell him "I think I know which drug I'm on!" but he quickly puts up his hands as if to ward me off and says "Don't tell me!! I can't know!". Sheesh! like I'm an expert?? He never believes anything I say any other time, why worry about what I think?

I tell the nurse about our ride in the elevator and she said "If you compromise the blind, they question the data." That made sense to me.

At the end of the 6 hours another EKG was performed and the nurse read the results comparing them to the pre-medicated one. She pronounced that everything was fine and after an education in how to inject Avonex I could go home.

I got to learn about how injecting something subcutaneously (under the skin) was different from injecting IM (in the muscle). It seemed simple and besides, I don't have to worry about messing with it for another 5 days. I'll worry then.

So, that ends the initial phase of my journey and so far I'm happy with the results. For a full blown hypochondriac to have nothing to complain about is a rare event indeed. The mystery medicine is doing it's job and I couldn't be happier. Now I can get back to my regularly scheduled program called Life.

There will probably be less entries unless I can find something to talk about and still stay on topic. Just wanted to let you know I appreciate the comments and the emails. Nice to have such a team of cheerleaders on my side.

Sunday, August 19, 2007

MS Awareness Video

This is an MS Awareness video created by a very talented lady who is a member named SilverLining on There's a picture of me, my daughter-in-law and son right toward the very beginning. (Third photo to be exact). I think she did a wonderful job making the Awareness Video and I urge all who see it to forward the link to family and friends.

Saturday, August 18, 2007

Peg Test

Here's a picture of the peg test. When I went the second time I took the camera with me and asked if I could photograph it. She gave me such a weird look that I went ahead and took the pic but didn't have the nerve to ask about photographing anything else. Too bad because I wanted a picture of the boom box that the numbers test cd was played on. After all, the recorded guy beat me the first day.

One thing I noticed right off the bat but was too shy to point out is that the inside of the bowl is heavily textured with the jack-o-lantern face, and it hampers the testee's (that doesn't sound right) effort to pick up the pegs.

Seems like it's a handicap in the test that measures how handicapped one is.

Randomization Party

I wanted to get invitations printed up to send out and invite all my friends, but there just wasn't any time. Drat! So my sister is taking off from work to go hang out with me for 6 hours. I'm not sure if I will be confined to a room or able to freely roam the 10 floors of the two towers.

This is a picture of the building that I will be in. Actually, I'll be in the other tower that you can barely see (that connects to this one by the walkway on the 10th floor. I couldn't back up any farther to get more of the building in the shot and couldn't see the LED screen anyhow since the sun was shining on it. You get the idea.

I've probably spent more time in this left tower (tower 2) than in the other tower (tower 1) even tho all my appointments have been in tower 1. I keep thinking that tower 1 should be on the left and end up going to whatever floor the appointment is on, walking the hallway that makes a big square around the elevators which are centrally located in each tower, and then coming down to go up the other tower. I've actually parked the car with a half hour to spare and then was late for my appointment due to wandering the wrong tower.

After posting that Avonex shot video in my last entry, I've been hanging out at where MSers gather to commiserate and share knowledge and fears. I made mention of how terrified I was of that needle and another Avonex patient told me that she/he (I'm not sure which, sorry) is using the 1" needle. Hmmmm, didn't know there was a choice, but come Monday, when I arrive for randomization, you can bet that will be the first question out of my mouth!

So now that my worries over the size of the needle have subsided, I'm going to concentrate on what to pack the cooler with and which DVD's to bring.

I'm thinking comedies. You can't go wrong with comedy and it eases tension. I think that's why every time I am admitted to the hospital I end up being a one-woman stand up show that's laying down. They can't shut me up, but nobody's really trying to, they are laughing too hard. I did discover that it's best not to crack wise when someone's trying to find a vein tho. You don't want them twitching with the giggles.

So I'm taking Failure to Launch, Sisterhood of the Traveling Pants, and Holiday. I cheated and watched Failure to Launch today, but one nice thing about cognitive issues in MS is that by Monday I won't remember any of it and will be amused all over again. I made the choices for my viewing pleasure based solely on whether or not my boyfriend would pull his lip up in a sneer if I asked if we should rent it. If I thought it sounded good but knew he'd hate it, I got it. I don't have to share or be compromising this time. This day is for me. Even guinea pigs need preferential treatment once in a while.

Snacks... plenty of water. (Am I boring or what??) I love Zephyrhills singles, can't get enough. Maybe some V-8, a couple of ham sandwiches, a bag of strawberries and a whole bag of trail mix. I'll be set!

I am trying to think of it as a party for my sister and I to just hang out and spend time together... and watch movies and snack. I'm going to try to ignore the hospitalish setting and that funny sterile smell. I keep telling my sister that one of these days our day trip is going to be for something FUN! Like the mall... where we wander from shop to shop spending freely... now that's my kind of randomization!

Friday, August 17, 2007

Avonex Injection Video

Warning: This is NOT for the squeamish!!

I have been curious about the difference between SQ (subcutaneous, or under the skin) injections like the Copaxone I'm familiar with and the IM (in the muscle) shots like Avonex.

Since I'm going to be getting either the placebo shot, or the placebo pill, it makes no difference when it comes to the needle... I will still have to plunge it into one thigh or the other every week, whether it contains Avonex or sugar water.

So I went in search of a video. The Avonex website has a video that I'm sure is a sterile, watered down, easy to digest video that is designed not to freak out newbies. Unfortunately, I was lacking some important plug in to be able to view it, so I went searching somewhere else.

I found this one on and I'm almost wishing now that I hadn't. I should have just waited until Monday and enjoyed my blissful ignorance.

Wednesday, August 15, 2007

MS raises it's ugly head in some very helpful places

I just got a phone call from HRS (about my Medicaid). I can't begin to tell you how unusual this is and how surprised I was. The government has gone to automated service to the point that contacting an actual human to ask questions about your case is virtually impossible, so to get a phone call from someone at HRS was nothing short of a miracle. I expected the news to be that my benefits were denied (you can't expect good news from the government calling you!).

The lady on the other end of the phone said she was tracking my bills and wanted to make sure I knew that I can now have Walgreens fill the prescription for Copaxone because my bill had come across her desk and she jumped right on it.

She'd read the note I wrote basically begging whoever was in charge to track it a.s.a.p. because I'd already missed a week's worth of doses. When she asked how long I have had MS, I knew this was taking a more personal interest. What government worker even cares that you have an incurable disease at all much less wants to know how long you have suffered? When I said "Eight years." she replied, "I've had it for 14."

We commiserated like long lost buddies who both new the secret handshake. She had been on Avonex for several years so I picked her brain about side effects (without any good news I might add) and she picked mine about Fingolimod.

She ended up giving me her fax number and telling me from now on anything that needs to be tracked could be sent straight to her. Sometimes MS can do you favors like that.... not often, but I'll take what I can get.

Tuesday, August 14, 2007

MS and no medication = working without a net

I was sort of melancholy as I finished up today's tests... I am now done with that phase, I've passed them all and will start the trial next Monday. My date with "Randomization" is Aug. 20th at 8:30 a.m. I wish they wouldn't call it that. It sounds like they are going to turn me into a zombie from Dawn of the Dead or something. Like I'm going to randomly start walking around like Frankenstein after I get a dose of drugs.

I asked about my current meds and when to stop them. I have been on (and off) Copaxone for the past 8 years. I'm sort of going to miss stabbing myself daily with a needle. Yeah, right. I especially like the dance I have to do with Medicaid and Walgreens every month in order to get the medication approved and have Walgreens fill the Rx. I have Medically Needy with a Share of Cost. My share of cost is only $50. I was just FIFTY DOLLARS shy of being able to get full Medicaid. It was some case workers idea of a cruel joke. I have to show that I have spent the money on the medication in order for them to approve the medication, but they won't reimburse for money spent. Between the nice pharmacist as Walgreens and I, we came up with a solution. He prints out a cash receipt for the $2100.00 of medicine, then deletes the transaction from his computer. I take the receipt to HRS and turn it in for "tracking". They say "oh, you paid $2100.00 for medicine, so that more than covers the $50 we require you to spend. You can now have your medicine." Then I go back to Walgreens, they run the medicine through again and I get it. Medicaid only gets billed once.

Anyway, I asked the lady in charge of orchestrating all my testing when I should quit my meds. I told her I'd been off them for a week already because Medicaid was giving me a hard time and I had run out. I just got a call from Walgreens today saying it finally went through. She said "Don't do any MS meds before Monday." I tell her I have a month's supply waiting for me to pick up; what should I do with it? She says to keep it in the fridge and if I have trouble during the trial and have to get out, I'll have my meds waiting for me.

Why is it that everyone's so hell bent on considering that I may get out of this trial? Do they know something I don't? Do I exude "quitter" mentality? I just don't think it's the best thing for my attitude going into this thing to have every other sentence end with the clause "in case you drop out." So then we start talking about the possible side effects of the medications I may or may not be getting on Monday, since that would seem to be the deciding factor in whether or not I stay in or get out.

She says when I show up Monday, I will get the pill (probably no drum roll or anything exciting involved). Then I will get the shot. Now, I've been stabbing myself, like I said, for 8 years now, so I'm no stranger to needles. It's just that those needles have been itty bitty small, under the skin needles. This needle is going under the skin, alright, but it's also going deep into my muscle so it's much longer. Kind of like a spear (the way I'm envisioning it, anyhow).

I know I will eventually get used to this needle, too, but it's like starting all over again. I remember the very first time I ever injected myself. It was in the top of the right thigh. I had to sit there squeezing a pinch of fat with one hand while I made practice motions over and over again in a swing of the needle hand toward the thigh. It seemed like I'd never work up the courage. All the while I'm replaying the instructions of the nurse who had come to my home the previous day to give me a lesson in shots. He said "in nursing school we practiced with an orange, stabbing the needle into it. It'll be just like that." So I'm figuring even though I didn't have the dimpled orange-peely skin, perhaps my body is thicker than I had imagined and I will have to give it some real "umph" to get the needle in there.

When the moment came and I got the courage to actually pierce my skin with the needle, it went in like I was made of butter, not orange peel. I buried that needle to the hilt so quickly it shocked me and my first reaction upon seeing it was to get that thing the heck out of me! I yanked it back out purely by reaction only and ended up having to stab myself all over again.

So I'm back to that level of anxiety with a brand new med that I've not heard the best opinions of. Avonex is an interferon and can have some nasty side effects like muscle cramps, fever, chills and general flu-like symptoms. I'm not looking forward to any of that.

On the other hand, if I get the Fingolimod (which I'm really hoping for) then I still have to stab myself with the huge needle anyway. The fear of the needle isn't going to be something I can skate around. D-Day is coming and I'm going to have to get used to pushing that honking big horse needle into my leg regardless of whether the syringe contains Avonex or sugar water. At least it's only once a week. Once I have gotten over the shock and repulsion of having to do it the first time it will be time to do it again, only I will have the added advantage of forgetting any pointers I have learned because it's been a whole week since I did it last.

My new fear du jour is that I will relapse while I am off medications. I'm working without a net here. I didn't realize that this particular fear had used my mouth to exit my head and find my trial coordinator's ear. She said it was all in my head. She said they'd done so many tests on me and none of them showed any signs of impending relapse. Whew!

I'll probably take a break and pretend that, for the next six days, I don't have MS at all. I'm laying on the beach listening to the surf -- if only in my mind. I have a feeling the next 6 days are going to go by way too fast.

Monday, August 13, 2007

No Do Overs in Cognitive Testing

The crack of dawn comes waaaaaay to early. I found this out when my alarm (which has been silent since the last day of elementary school before summer vacation) began blaring in my ear at 5:30 a.m. The drive there was not as bad as I had feared. :-)

Today was my EDSS (Expanded Disability Status Scale) testing along with MSFC (Multiple Sclerosis Functional Composite). There seems to be a lot of acronyms involved in clinical research or maybe that's all part of the emphasis on secrecy about what they are doing in the same way that making it "double blind" is supposed to keep us guessing.

The MSFC test was quite interesting. The lady who administered it explained everything beforehand to me. There are three parts and they are each designed to measure one of three different aspects of how MS affects a person. They are: leg function/ambulation, arm/hand function, and cognitive function. To measure leg function, I was taken to a hallway and told to walk as fast as I can from a marked point to a doorway down the hall. She used a stopwatch to time me. Then I repeated the effort from the doorway back to the starting point. That was the easy test.

The next test was the arm/hand function test. It sounded simple. A pegboard with 9 holes was placed in front of me with a bowl in front of the pegboard containing the pegs (sort of in the "salad bowl" position if the pegboard had been a dinner plate). She timed me first placing all the pegs in the holes one at a time and then immediately removing them back to the bowl with my left hand, then right, then left again. I think I got a little slower by the second go round with the left hand. It was harder than it sounded.

The last test was the most difficult. Of course it was a measure of cognitive function, so of course I would find that hard. (haha) It was a CD recording of a man saying "your first number will be said in 5 seconds", and then the same guy says a random number from 1 through 9, waits a few seconds and says another 1-9 number. The objective is for me to add those 2 numbers in my head and say the result. The first 2 numbers were easy... 1 and 4. "5!" I say, all proud of myself (this stuff is easier than I thought!). Then you have to remember the 4 (not the 5 that I said) and add it to the next number the guy says and so on.

They let you have 2 practice runs to get the hang of it. We went through the first practice and I didn't miss a single one. The test giver's jaw dropped. She said "Wow! you did excellent! What do you say we skip the other practice and go right to the test?" I just shrug. Piece of cake. The first three numbers were a breeze and I was getting all cocky. Then something happened and I paid too much attention to myself saying an answer. I got confused and added the guy's next number to my answer and realized my mistake. By then he'd spouted out three more numbers and would not shut up. Then it was like he was the cocky one and he kept on giving me 7's and 9's like he knew they were my Achilles heels. I could almost hear his "muahahahahahaha" evil laughter between numbers. I froze and wanted to shout "DO OVER!" but I was warned in advance that the test would go on whether or not my brain cooperated. Doh!

After that embarrassment was complete, I was left alone to contemplate the wallpaper and the floor tiles until a neurologist came to give me the EDSS test. Fortunately, this test didn't test much cognitive stuff and the guy hadn't witnessed my humiliation by the recorded voice, so I was able to pull myself together and at least act halfway intelligent.

This test involves the usual neurological stuff where they whap you on the knee with the little hammer and stuff like that. Neurologists that specialize in MS know to stay far to the side when whapping the knees of someone with MS. My foot flies out with lightning speed right to groin level if you so much as stroke my kneecap with a feather.

There was the sobriety walk (honest occifer, I only had tee martoonies!), the finger to nose touching, and various other odd tests all designed to tell the neurologist what parts of my brain and spine have been damaged by the lesions that MS has eaten through my protective myelin covering.

There were some things he had to ask me because he couldn't witness them. One question was "Can you walk a quarter mile?" I just laughed at him. Not taking incredulous laughter for an answer, he expounded on the question in case I didn't comprehend: "Say, if you went to Disney World and had to park far across the lot, could you walk to the gate unassisted, or would you need to take the tram?" My answer: "If I used all my willpower to force myself to believe it was a life and death matter that I make the march unassisted for a quarter mile across the sweltering hot parking lot in order to save my child from a burning vehicle, then yes. I could do it. Other than that, if I was just going to enjoy Disney, there's no way I could walk a quarter mile and not have to find somewhere to soak my legs in a whirlpool and take a nap immediately afterward. There would be little point in going inside the gates."

After the neurologist got done whapping me with a hammer and tickling me with a buzzing tuning fork, the next experience was to be hooked up to the Holter monitor. I was scrubbed at various locations on my chest and stomach with alcohol and what felt like 100 grit sand paper. "It's to make the connections work better," she said. Then the sticky pads with imbedded snaps went on. Then the wires snapped to the snaps and hooked up to a little box. I felt like a carburetor. I asked her if they would be able to see how stressed out I was driving solo in Jacksonville traffic by looking at the Holter monitor readings. She laughed and said "probably."

All in all it wasn't a bad day of testing, as days of testing go. I'm beginning to feel like a test connoisseur since I've had so many of them. Tomorrow I go back and do both the EDSS and MSFC tests over again. Today's tests only allow me entrance into the trial and tomorrow's are the baseline. Really... is it necessary?? I'm practicing for the next battle with the recorded numbers guy. He's not getting the better of me tomorrow!

Sunday, August 12, 2007

Overcoming my fear of driving

If nothing else, joining this clinical trial has helped me already in that I have been forced to confront my fear of driving. I don't mean I have a panic attack if I just get behind the wheel and go grocery shopping. I'm not that bad. But after living in a small town for 20+ years and seldom having to venture out of the county, driving on I-95 can be anxiety-provoking.

The Comprehensive MS Center in Jacksonville, FL just so happens to be located on the north side of town just past the intersection of several various highways and streets that overlap in what resembles a huge pile of spaghetti. I love spaghetti, but I prefer it on my plate and not under my wheels.

I have been enlisting the aid of several more daring, less phobic family members to act as chauffeurs so that I can avoid having to face this fear of fast cars all around me. So far it's been working well even though while riding with my 25 year old son I have had to shield my eyes and grab the "oh crap!" handle several times.

He's a lead foot and drives like it's a race that he's hell-bent on winning. When asked why he wasn't using the cruise control (hint hint) his reply was "I am. It's set for 80." He likes to face life head on and doesn't suffer the "what if" mentality that has paralyzed his mother for so long. When riding with him the trip takes 45 minutes going the no-nonsense direct route of I-95 straight there.

The other family member who drives me is my sister. She's like me only the milder version. She doesn't like traffic either but doesn't let the thought of it send her running for the Xanax. We take US 17 to the hospital on a more pleasant 1.5 hr. version of the trip. That route is not without it's panic-provoking moments, however, as there are several turns to make that move you in a sidewinder-like motion to get to the hospital. We've had to turn around in parking lots more than once to get headed in the direction in which we should have been going.

One time, riding with my sister, we were coming back from the hospital and missed a turn somewhere. The four lane road we were on became two lane, then nearly one lane and then looked for all the world to change into a one way hiking trail into the wild. Four eyes between us and still we missed that crucial turn. Back up, back up... we got back to civilization and (because we weren't men) stopped and asked for directions.

So, I am very comfortable going on all these trips that have each become a mini adventure all its own. Now comes the moment of truth. Just how comfortable am I? Tomorrow, in order to get to the MS center for my first half of the EDSS test and to be fitted with the Holter monitor, I will be driving myself.

I'm not taking the direct, 45 min. trip and going up I-95. I have enough gray hair, thank you. No, I'm going to attempt the death-defying feat of driving up US 17 totally unassisted and without a net. Cue drum roll please.

I really think it's going to be good for me. Repeated exposure to face your fears is how therapists help you overcome them, after all. I'm just hoping the Holter monitor can take the beating.

Saturday, August 11, 2007

A hypochondriac joins a clinical trial

So I'm entering a clinical trial. Visions of being stuck in a tiny cage with one of those exercise wheels comes to mind. Lab rat. But even though I enter the study with some amount of trepidation, I am still excited.

This is cutting edge stuff. Historic, actually, in the field of Multiple Sclerosis treatments for until now there has been no disease modifying medication that didn't involve needles and regular injections. Fingolimod (nice name, eh?) is one of the current drugs being studied that will, if approved by the FDA, change the face of MS treatment the world over. No more dreaded needles, injection site reactions, dents from Copaxone, red patches from Avonex, etc. People who are newly diagnosed will no longer have to come to grips with being told they could slow progression by stabbing themselves on a regular basis when they are just beginning to suffer the shock of wrapping their minds around the fact that they have a incurable disease. That's more cruelty than anyone should have to endure.... "hey, you have an incurable, debilitating disease that could possibly cripple you, but if you take this needle and stab yourself once a ___ (insert day, week, month depending on your drug of choice) then you might slow it down some."

I pretty much fell into this trial quite by accident. I was flying solo on the MS path. My neuro for 6 years had the unfortunate luck to suffer a stroke himself and was put out of commission. I was left doctorless and spent 2 years self-diagnosing and treating my MS. The only neurologists in my dinky town either wouldn't accept new patients, wouldn't accept MS patients, or wouldn't take Medicaid or some combination thereof. I was constantly stressed about it, and in hindsight it's really no wonder that I was having a relapse every 3-4 months. Stress can do that to you.

Finally my PCP got proactive on my behalf (since he realized I was basically clueless and had developed a defeatist's attitude) and got me an appointment with Dr. Kantor at the Comprehensive MS Center at Shands Hospital in Jacksonville. At that first visit we discussed changing my disease modifying drug from Copaxone (the only one I'd ever taken) to one of the others which are all interferons. I had a lot of apprehension over this change due to my fears of the side effects with any interferon. I have heard that they make you sick with flu-like symptoms, can cause depression, and can make you suicidal.

Dr. Kantor had a better idea. He just happens to be the lead investigator for the MS Center's research program which is working in conjunction with Novartis Pharmaceuticals to investigate the safety and efficacy of FTY-720. Once I said yes, the whirlwind intensive testing-to-make-sure-I-can-participate phase began.

I had an MRI of my brain (which wasn't so bad -- I had to have my head in that birdcage thing, but at least I got the 4 foot tube instead of the 8 foot tube!! My medically necessary Xanax for claustrophobia instantly became recreational upon seeing the 4 foot tube. (photo not of actual MRI machine I was in, but you get the idea).

Then I had a CT of my chest to make sure there's no existing lung disease. I also had an EKG and they drew a LOT of blood.

The next visit was the one I was worried about. I really was scared of the eye exam most of all. Due to a couple people developing macular edema in previous studies of Fingolimod, the informed consent detailed a ophthalmology visit that sounded more invasive and maybe even painful. Turns out it wasn't so bad after all. I got my eyes dilated and checked for pressure, then she shined some really REALLY bright light in them to look around and I swear I saw spots three hours later from that.

Then it was off to get an OCT which I'm guessing was an optical cat scan. I had to look in this box (like the one shown in the picture) while they had me stare at a green dot on a field of red and showed me a light show. Hard to describe, but I'm guessing they got more out of it than I did. Then I had a Humphrey's test. That's a field of vision test where you look into this bowl and stare at a spot in the center while little lights flash all around one after the other. You have to press a button (like answering on Jeopardy!)
every time you see one flash. (See blurry image below of a Humphrey's testing machine.)

So, with most of the testing out of the way, I have only 2 more appointments before I partake of the medication. The EDSS (Expanded Disability Status Scale) is next and is done in 2 parts (2 different days). And I have to wear a Holter Monitor for 24 hours.

Randomization (the fancy name they give the big day of getting my first dose) is set for August 20th at 9 a.m. rain or shine. It's an all day event because I have to have my blood pressure and heart rate monitored hourly. Seems Fingolimod can lower your heart rate by up to 25 beats per minute upon administration of the first dose. Fortunately, it won't do it again unless the meds are stopped for 8 days or longer and restarted.

In this study, I have a 2/3 chance of getting the Fingolimod (FTY-720) as there are 2 groups getting it (one at 1.25 mg and another at 0.5 mg) pitted against an already approved MS disease modifying drug (Avonex). I'm crossing all my fingers and toes that I get one of the doses of Fingolimod because I'm not real thrilled about starting an interferon. :-( But, hey, it's better than having a possible placebo and finding out I was on NOTHING after 6 months or a year.

I have already nearly gotten myself kicked out of the trial because when my labs came back about my blood work I found out I have low platelet count and a high MCV. I got on the internet and did some investigating and decided I have Lupus. My neuro was questioning why this was coming up all of a sudden with no prior mention of Lupus. He thought I was trying to chicken out of the study and said "no problem, we'll just take you out of the study"... and I'm begging "no!! NO!! please!! I don't want to get out -- I was just worried, because of what I had read, and what others have told me." LOL He told me to stay off the internet, but he let me stay in the study. heh... guess I'm not staying off the internet, am I? Oh well... he's never met a hypochondriac with quite the imagination I have. Wait until I get that first pill! I have the doctor's pager number. (evil grin)

For more information on Fingolimod FTY-720, here are several links below: