Experience Multiple Sclerosis

For anyone who feels the isolation of enduring the symptoms of MS while all the healthy people around you are oblivious to what's going on, they can now join in!! There are only a few tools necessary to aid in their thrill ride.

First, you will need a pair of stilts with high heels attached. Stand up on the stilts and try to walk around in the high heels. Feel like falling over? Good! That's what it feels like trying to walk in any kind of shoes when your balance is off.

Next, fill your home with mud until it's waist deep. Try walking around doing your normal everyday chores. Hard to walk? Does every step take effort and wear you out? Good! You're doing it right. That's how it feels when you have weakness in your legs.

Now, after you have spent all day -- and then all night -- removing every speck of mud from your home and belongings, fall back into that easy chair and relish this next feeling...fatigue. You are so utterly tired that every muscle in your body is screaming out with exhaustion. Could you live every day being that tired? No? Most people with MS suffer from chronic fatigue which can leave you feeling like you just pulled an all-nighter...but you just woke up.

Okay, you're done resting! Up and at 'em! Grab a bucket and fill it with ice. Now go run cold water in the tub, pour the ice in and then get ready to stand in the water. Brrrr!! Cold right? Or is it so cold it actually feels like it burns? Welcome to my world! Neuralgia is what it's called, but it doesn't do the burning icy pain justice, does it? You can get rid of the pain, but only with drugs.

Now, on to another fun one! Go out back to the tire swing. Have your buddy spin you round and round and round until the rope just about knots up from being twisted. Have him stand back and let go. As soon as you are done whirling around, immediately get out of the tire swing and go try to take the trash out or carry the laundry to put away, or go to work...that feeling that we used to seek out and relish as a child isn't so fun any more, is it? Some people with MS have to deal with dizziness that never goes away. It's no fun for them either.

Now, walk around in swim fins all day. Just for the heck of it. You have drop foot.

Go run a mile and notice that tightness and cramping in your calves. You know why you have it -- you just ran a mile. People with MS get it and it's call spasticity. We don't have to run at all to get it. In fact, we don't even have to stand up.

Next, go look directly at the sun. Just stare at it for a while. Then when you look away, do you see that black spot? Seems like it takes forever to go away? Try dealing with that for months. It's called Optic Neuritis when we get it.

Have an ace bandage around? Just for kicks, wind it real tight around your chest several times and then go about your day. They call that the MS Hug.

Drink a whole gallon of water, wait until your bladder is about to burst, then jump up and down while trying not to go. You're about to go just from reading this, right? For some people with spastic bladders, the bathroom is never close enough. Same thing with bowels, but I won't go there. You get my drift.

Sit on the floor with your legs folded up underneath you to where you are sitting on your feet. Remain that way until you can't feel your feet because they are so sound asleep. Now, get right up and try walking around. Kind of a weird feeling, eh? Can't feel your legs. Now, feel those pins and needles as your circulation comes back? Imaging being stuck at that stage... you have the pins and needles constantly and you never can quite feel your legs. Yep, MS.

Put on some oven mitts and try to get dressed. Need I say more?

All of these things happen because Multiple Sclerosis is eating holes in the protective covering of our spinal cord and brain. MS is caused when the immune system gets confused. Something goes awry and the immune system which is there to guard us and protect our bodies from illness and injury decides that our myelin sheath (the equivalent of the plastic outside covering of an electric cord) is an enemy to be vanquished. T-cells are dispatched and the myelin becomes inflamed as the fight begins. As the immune systems wins the battle, the myelin is eaten away and the electric cord which is our brain and spinal cord is then exposed, shorting out, sending signals helter skelter. We end up with the symptoms described above plus a full spectrum of others, too numerous to mention.

That's why MS is different for every single sufferer. The unique ways that holes are eaten in the myelin sheath determine what shorts out and thus what symptoms we have.

Medications have been developed to slow this never ending, incurable process, and more medicines are in research as I write this.

I am proud to be a part in any small way of moving toward a cure. My blessing is that by offering my body up for a clinical trial I get to experience the miracle of having a boring old normal life for a while. I have been relapse-free for over 8 months. Normal and boring are good things.:-D

How MS can make you feel...

I was just cleaning out a closet (yes, Mom, don't faint) and came across an old drawing tablet that had some pen and ink drawings in it. This one is one that I did after getting the (mis) diagnosis of Multiple Sclerosis. I was overwhelmed with sadness. Turned out the doc was a quack (or was he now? hmmmm) and I was able to forget the feelings which drove the desire to put them on paper in the form of a drawing, and get on with my life. It would be another nearly 12 years before I got my second, more believable, diagnosis.

Anyway, thought I would share. The image is copywritten, so fair warning, it's MINE all mine! Besides, it looks exactly like my eye, so I can prove it's mine. hahaha But you can look. :-)

5th Month Fingolimod Study Anniversary

Today my clinical trial is 5 months old. Seems like just yesterday I was popping that first pill and watching movies with my sister while I suffered through six hours of uncomfortable chairs and hourly vital sign checks. Ahhh how the time flies!

I'm going to be in a panic after the six month mark, that'll be when I'm on the downhill slide to last call at the Fingolimod Bar and Grill. Like any hard core alkie, they are going to have to pry the pill bottle from my hands when it's all over. I don't want to give this stuff up.

Back before I started the trial, I was having some *issues* with my mental state. I was panicking all the time and carrying my Xanax around like a binky, afraid to get too far away lest I need it. I was also, I look back now and can say with certainty, depressed.

I think emotional problems scare me more than the physical symptoms of MS. I never was one for getting "high" as a teenager for fear of being out of control. I was the designated "straight" person for all occasions. Before I started this trial I was having racing thoughts, panicking and generally living under a cloak of gloom and doom. I guess that must be depression.

Well, my doctor prescribed Zoloft just as a matter of course upon hearing of the panic attacks and sensing my general overall unease. He scribbled the script and handed it to me like it was just a note that said "I hope you get well soon." To me it was a billboard that stated "WARNING!! YOU HAVE GONE STARK RAVING MAD AND THIS Rx PROVES IT!!"

I took the prescription and I got it filled. When I picked it up, I took the brown bottle and put it on the shelf. I read the insert with all the possible side effects and then I went and took a Xanax to calm down. Turns out just the very idea of being on an antidepressant was enough to give me a panic attack. In the end I just couldn't do it. The full bottle of pills is still sitting on the shelf, unopened. Waiting like a sentinel there as if mocking me, saying "I'll bide my time...we both know you are crazy and will one day have to break down and let me fix you. I have all the time in the world. Um, or at least until my throw away by date."

Then a nutty thing happened. I gradually got sane. And quit dwelling on gloom and doom, and got back to being normal (which I admit is a term I use loosely when referring to myself). I am blaming the MS for the emotional problems I had at that time. Maybe it ate a hole right through the part of my brain that controls emotions. Who knows?

Somewhere along the way I came across new information that Fingolimod (FTY720) is being found to not only slow progression and reduce the frequency of relapses in MS patients, but to also help with depression. I'm wondering if that's the real reason I don't need the ant-depressants. Maybe this stuff is so good that it's going to fix everything that's wrong with me. It hasn't done a thing for my procrastination, tho. I still don't ever finish what I start (which is why I'm so proud of myself making if 5 months to the day so far -- I have had to make sure I took that pill every day and the shot once a week for 5 straight months... no mean feat for a procrastinating unorganized crazy person).

Anyhow, here's a link to the info about Fingolimod treating depression:
http://www.neura.net/channels/1.asp?id=736

Here's an excerpt if you don't want to go there:

Dr. Kappos and colleagues also described a 6-month, randomized, placebo-controlled, phase II study (with an 18-month dose-blinded extension) of the effect of oral FTY720 (fingolimod) on depression. FTY720 1.25 or 5 mg/day reduced the proportion of RRMS patients with clinical depression. At 6 months, the proportion of patients with depression on the Beck Depression Inventory II (BDI-II) was significantly lower in the FTY720 1.25 mg/day group (17.07%; P=0.0176) and the FTY720 5 mg/day group (18.99%; P=0.0407) when compared with the placebo group (33.33%). Among patients who switched from placebo to either dosage of FTY720 during the extension phase, the proportion with depression by BDI-II decreased at 12 and 24 months to levels similar to those in patients who received FTY720 continually throughout both periods. FTY720 has previously been reported to reduce relapse rates and MRI activity in a phase II study of RRMS (Kappos et al. NEJM 2006; 355:1124-1140).

So, maybe it's the medicine, or maybe it's just the fact that I've been relapse free for over 8 months now, but I'm not depressed. I don't cry at commercials on TV, I don't burst into tears over a country song...I must be okay now.

And the really REALLY ironic thing about all this is that it's being reported today that "Nearly a third of antidepressant drug studies are never published in the medical literature and nearly all happen to show that the drug being tested did not work, researchers reported on Wednesday."

Here's a link to that gem.

Why take a drug that apparently may have no effect at all when the one you are already on has pleasantly surprised you with the side effect of relieving your depression?

I'm happily celebrating my 5th month mark. Who wants cake?

I found Greg House's Cane!

Okay, so I said I was only blogging about the trial, but this was too much fun to pass up. There was a thread on MSWorld.org about how people hate the stares that come from having to use a cane. Personally, I don't give a rat's arse what anyone thinks and if they stare that just means I must be interesting which is a sad statement on their OWN lives. HAHAHA

Anyhow, having used a cane quite a number of times in the past -- usually with every flare -- I have often thought I would like a nicer one than the utilitarian silver one that I've got. I'd never get rid of it, tho, because that cane was my father's and when I am using it and have my hand on the handle, it feels like we are holding hands again. Plus it's got his "I Voted!" sticker on it still from the last vote he cast. He never did find out who won because that was the year of the Hanging Chad. He died before the recount was finished.

But I digress. I have seen people with cool canes, but I can't for the life of me find any. Today I googled "stylish canes" and hit the jackpot. Apparently googling "cool canes" wasn't getting me the same results. You really have to have a diverse vocabulary to google stuff with any finesse.

I visited Fashionable Canes and hit the jackpot, finding Doctor House's (Hugh Laurie from the show House on FOX) cane with the flames on it. Woohoo!! Ever since I saw the episode where he found the Flame Cane in a head shop, I've wanted one. For $27.95 plus shipping, I just may get one, too!

I figure it this way: If we have to have these things as extensions of our being in order to totter through this life, why not make a statement?! The flames hit my funny bone so hard that cane just screams "me!". The only other thing I'd want to add is a wheelie bar. :-)

At least if I had that cane waiting in the wings to make its debut, it would make my next relapse (not that I plan on having one) something to look forward to.

Where FTY720 (Fingolimod) comes from

I knew from prior research that FTY720 was derived from a fungus that has been used for centuries in ancient Chinese medicine, but today I actually stumbled across an image of the fungus. Thought it would pique your curiosity to share it with you:



It's not much to look at and truth be told, I am so glad they figured out how to encapsulate the good stuff and put it in tiny pill form. I would hate to try to gag one of those down every morning with my decaf. Ewww. Actually, to be more accurate, they figured out how to synthetically reproduce it, so I don't think there's a laboratory growing fungus somewhere to keep all us trial patients supplied with pills.

An interesting read is found on the page I got the image from:

http://botit.botany.wisc.edu/toms_fungi/jun2006.html

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.

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!!