Wednesday, February 27, 2008

Fish Oil, Not Snake Oil

I have been taking Omega 3 in the form of Fish Oil for some time now. While checking out for anything MS related, I came across this interesting video posted by a medical student. His exuberance over something not created by a pharmaceutical company is refreshing.

He's quite a good writer as well. His blog can be found at:

Hopefully he can retain his fascination, inspiration, and determination once he becomes a doctor. The world needs more like him.

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Monday, February 25, 2008

The Halfway Mark

Last Thursday was the halfway mark in my clinical trial and for some reason I've been so melancholy about it that I didn't even want to blog it. I just don't want it to end and there's always the "what if" about whether it will get approval or not. I can't imagine that it won't but I fear if I don't hold my breath and cross my fingers, knock on wood and any other superstitious thing I can think of doing, I might jinx it or something.

Anyhow... the checkup went smoothly. My sister drove me again because of having to have my eyes dilated for the eye exam and OCT. My first appointment was at 9 am for the Pulmonary Function Test, and the last appointment of the day was going to be the OCT at 1 pm. I don't know why I expected it to all go smoothly and as scheduled. It never does.

I'm still getting over this head cold that decided to make a home in my chest. It only bothers me at night and first thing in the morning with a gagging cough that threatens to push my lungs out my mouth. I have started sleeping in my lazy boy all night just so I'm somewhat inclined. If I lay flat I cough nonstop. I was worried that my breathing test would be skewed because of this, so I made sure I told the guy doing the test.

He's the same guy who always does the test and after he did the first part of it (where I'm sitting in the plexiglas box) he said "you actually did better this time than last time since you had a cold last time."

Geeze! I'd forgotten that! Anyhow, he said that my lungs were normal just like they were last time.

Then it was off to go back across 4 lanes of traffic to get from the hospital to the Towers. For the last 7 visits I have walked there, risking life and limb. On this occasion however, the tester guy asks if we knew about the Orange Shuttle. Huh?? All this time there's been a shuttle I didn't know about?

He walks us out the back entrance to the hospital to an area with an orange sign that says "Orange Shuttle Stop". He leaves us there with the warning "Don't take the blue one because it goes all over town. The orange one goes from here to the Pavilion, to the towers."

A few minutes later, here comes a big white bus (he neglected to mention WHITE) and we just stood there as it stopped. No other people were at the stop but my sister and me. We tried to wave the lady driving the bus on, but she just pulled up farther and opened the door. "What are you waiting for?" she asks. "The Orange shuttle, we reply in unison."

"This IS the Orange Shuttle, get on."

We say "no it's not, it's white." (Like because she's inside, we are compelled to describe the outside to her so she has a clue). She rolls her eyes and tells us she keeps telling them she needs something orange to stick in the window so people aren't so confused. Turns out they have 4 orange shuttles and 3 of them are white. Go figure. We get on.

Next stop is the research department to see my trial nurse for the blood work, urine test, MSFC, EKG, and exam with Dr. Kantor.

The MSFC, I'd forgotten all about. It's the test with the dreaded Numbers Guy. See this post for the horrors of the first MSFC exam. The numbers guy stumped me again and I was left sitting and listening to him rattle off numbers for 3 in a row somewhere in the middle. It was those 7's and 9's again. You have to add 2 numbers and say the result and wait for him to say the next number. You add that to the last number he said while trying to forget the previous total which you just said out loud. Sound confusing? Try playing the game. Just as last time, the practice test went perfectly. I waited for the real thing to screw up.

Then, when that was over, I did the peg test and it seemed a little harder this time. My hands just don't want to behave themselves. Either that or the pegs shrunk since the first time. I actually had one peg stick to my sweaty fingers as I went to drop it in the bowl. It release when I had my hand, mid-swing, over the table. I lost precious seconds scrambling for it and nearly knocking it on the floor. If this is a test of how clumsy one can be, does that mean I passed?

Speed walking came next. I was so excited that, between last time I was tested and this time, I have actually retaught myself to run, I just had to ask...

"Is it okay if I run instead of walk?"


"no really."

(more laughter, then a pause)

"you're serious?"


"No, honey, it's a walking test. Just walk as fast as you possibly can."

So I walked the way the kids at school walk when they know they aren't allowed to run but can't help pushing the rule a bit by speed gliding. I'm sure I did way better this time than last.

Next, the blood draw. Two little vials rested next to the rubber tourniquet, alcohol wipe and pokey stick. I tried to go to my Zen place and not think about it. I have small veins that wiggle and roll and hide when someone tries to prick them. Last time it took the one lady six tries before she went and got Geri (a name I can remember, yes!) who is the Master Sticker. She got in right on the first try and told me which vein and the angle it lies at in the left elbow area for future reference.

This time I say "well, if all else fails, you can go get Geri."

"Um, Geri got another job."

"Crap! But no, that's fine, you'll do just fine, I'm sure! No offense or anything. By the way, the vein's right here, running at this angle."

Thank God she left me with that tidbit of info before moving on to bigger and better opportunities. My nurse stuck me good the first time. But, right before she did, she said "Oh, I forgot to get the Kit out." She brings out this box and opens it to expose another several dozen vials (actually only 4 more, but once you've reached 6 vials they might as well get the last couple of drops you have left in you while they're at it). I nearly fainted, but I stayed strong.

I still needed to get my EKG, see the doctor, and fill out the PRIMUS paperwork. (That's a questionnaire about how MS affects your life). But there was no time. I was running late for my eye exam. She said "go to your appointment then come back for the rest of this stuff." So I did.

The eye exam went great. No changes to my vision and I left there all blurry eyed, gripping my sister's arm and feeling like Mr. Magoo. We went to the truck and had the lunch we packed while waiting for time to go have the OCT.

I love going for the OCT after seeing the eye doc because my eyes are already dilated and they bump me to the head of the line while the other poor saps are waiting for their drops to start working.

The OCT went well. I kind of enjoy watching the spirograph-like designs and the challenge of not blinking. I never have the urge to blink until someone tells me not to. Kind of like "Don't swallow." when you are having a C-spine MRI. All you can think about is to wonder if anyone every drowned in their own saliva.

We ended up the visit back at Research where I got the EKG and they scheduled a future appointment with the doc because he wasn't going to be able to squeeze me in that day.

The EKG went well. I heard the nurse and one of the doctors looking over my printout.

"Look at this."


(my ears perk up and my heart starts pounding and palms sweating in anticipation of bad news.)

"Have you ever seen such a perfect EKG?!"

"Can't say as I have. That's a beauty. Just look at that spike."


That was my excitement for the day and lucky I wasn't still strapped to the machine or they might have changed their tune.

I was loaded down with my 3 boxes of new shots and my 3 bottles of pills and sent on my merry way.

Everything's looking good so far. Keeping my fingers crossed that the second half of this study is as successful as the first. I'd love to say I could barely remember my last MS attack -- and not have it be from cognitive dysfunction. :-)

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Saturday, February 23, 2008

Wasting Spoons

Hi. My name is Jeri and I'm a pack rat. I have been all my life and I'm not sure there's any hope for me. I'd really like to change but every time I make an effort to clean a spot in any given area of my home, it ends up becoming a prime location for everyone in the house to set stuff down. This could be solved simply by removing or inclining every flat surface in the house but then it would be hard to eat dinner with everything sliding on the floor.

Even though I have had a predilection for hording stuff and not putting things in their place all my life, (read: pre-MS) I like to use the good old Fatigue Excuse for not dealing with doing something about it now. I can't waste my spoons! I read the story (in which, for people with chronic illness -- lupus in the story, your energy allotment for the day equals so many spoons) and I decided that my spoons are more important than any amount of housework. Finally! I've been given a legitimate excuse not to force myself to deal with the clutter! The only thing better would be a prescription from the doc stating "under no circumstances should this woman clean anything." That would be SWEET.

So now, as I sit surrounded by stacks of papers that should be filed, projects that have been started and abandoned mid-inspiration, and baskets of clothes that have been searching for their long lost birth dresser, I wonder how others with MS are managing. I mean, even though I do have some fatigue and need to take afternoon naps, it's not like I'm on Provigil or something. I don't have it so bad that it has affected my daily routine other than to give me a get out of housecleaning free ticket.

I told myself that I can be happy living like this because it's a waste of spoons to spend all day cleaning. But deep down, I feel like if I really applied myself (and rented a backhoe and a dumpster) that I could have a house that had that minimalist, zen-like appearance that is so calming.

Instead, I clean one section of a room and then put on mental blinders and look only at that clean spot, relishing the idea that if I could encourage clean spots to grow the way clutter seems to my whole house would erupt in plain white walls, polished floors and flat surfaces holding only those indoor sandboxes with the tiny rakes, or maybe groups of black shiny stones that look cool but have no purpose.

I have tried to tackle this problem in the past many times to no avail. I signed up for Fly Lady's email list only to discover my inbox looked like the rest of my house in a matter of minutes. I quickly unsubscribed. Being bombarded with emails telling me I had to get completely dressed every morning including the shoes goes against my philosophy that shoes are footwear for outside the house and my pink fuzzy slippers are acceptable daytime wear when indoors.

I've also bought books over the years to learn how to de-clutter. Last weekend I decided to tackle a closet whose door had not been opened in several years. I found tons of saved gift wrapping paper, empty containers that would be good for holding stuff some day, and paint cans with the remainder of whatever color the spare room had been painted 2 colors ago (in case of needing a touch up). I removed a Lawn and Leaf bag full of useless things I couldn't part with and underneath the stuff on the shelf, guess what I found!?? A book called 500 Terrific Ideas For Cleaning Everything. Honest to God.

All of this is amusing, no doubt, but it's left my mind just as cluttered as my living conditions and wondering if there's a health benefit that could be obtained by sacrificing my spoons for the betterment of my environment. After all, I don't work outside the home and can pretty much take a nap any time I want to. What's it going to hurt to really roll up my sleeves and make a dent in this stuff? Will applying myself bring on a much feared relapse? Does living in clutter cause a mental funk that is conducive to possible exacerbations?

All I know is that Better Homes and Gardens ("than Mine", the cover seems to scream) will never be beating a path to my door no matter how clean I get the joint. Knowing this, what is an acceptable level of clutter? I would really like to get to the bare walls and floor and start over and find out.

I was in a flood once as a kid and we lost a lot of earthly belongings. It makes you realize that "stuff" is NOT important. We had our family and everyone made it through the ordeal none the worse for wear. That was all that really mattered.... so why is it now so hard to part with "stuff"? Some phd guy could probably tell me, but I want a real answer that doesn't uproot my subconscious in the explanation process.

If I fear a relapse so badly that I can't lift a finger to file some papers because I might tax myself, then I'm wasting my good years doing nothing while I'm completely capable of doing lots of things. Sure, if I take the fatigue into account, life has become harder, but I have seen people in wheelchairs who have accomplished more in their lives that I am doing with my body whose legs still get me around. I'd at least like to die with a clean house one day and have my headstone read "She gave up her spoons for a zen-like existence". Better than going out in a blaze of clutter and having my headstone read "if we could have only gotten to her in that maze of stuff, she might have been saved."

It would help if 2 other people in the house weren't also pack rats. They don't even have the moral struggle with it that I do. They are oblivious to the CHAOS (Can't Have Anyone Over Syndrome -- see I'm sure the conversation that goes on in their minds as they lay down their tools from the day's remodeling project or their backpack from school goes something like this:

"Geeze, she hasn't even cleaned a spot for me to set this junk down! What am I supposed to do with it? Oh well, maybe it'll balance here. Man, she needs to do something about this." (big crash behind them as they walk away and don't look back to investigate).

I guess I just found the reason those clean spots don't grown. I'm going out to buy a new set of spoons and roll up my sleeves. The only way to test out the theory that a clean house is a health benefit for your mind, body and soul is to actually put it to the test.

I will watch a marathon of Clean Sweep shows where people whose homes are way worse than mine have a make over and get de-cluttered, then pump myself up saying "you can do this! You can throw out that pair of jeans you haven't worn in 10 years or that packing slip from something you got in the mail 2 years ago!" But then I get suspicious that Clean Sweep never does follow up stories 2 months later to see if the newly decorated space is chock full of clutter again. All they did was give the pack rats a whole new set of flat surfaces that invite the full arms to empty spontaneously.

Whew! Just writing about it has warn me out! Maybe I and my spoons will go curl up in the easy chair and gaze at that clean spot over in the corner and drift off into a blissfully uncluttered dream. I hear Fatigue calling. Gotta go.

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Tuesday, February 19, 2008

From the Novartis Archives

I came across a very interesting PDF file when checking my site stats today. Seems someone came to my site from a search for FTY720 at Novartis' site. Of course I got all side tracked seeing what the other search results were and I found this really interesting, informative and engrossing article.

Full Article in PDF format
(you'll need Adobe Acrobat Reader to read it)

Some highlights I found interesting were

  • A compound that may lead to a safer class of immune system drugs can trace its roots to a parasitic fungus (Isaria sinclairii) that preys on insects and eventually grows out of their dead carcasses. And while the practitioners of ancient oriental medicine may not have understood the fungus’ complex life cycle when they named it ‘insect in winter, plant in summer,’ they did understand the powerful health effects bestowed by a broth made from the fungus. Modern molecular medicine studies have shown that the traditional remedy practiced for thousands of years contains several chemicals that potently modify the body’s immune response.
  • FTY720 was first made by a Japanese company, Yoshitomi Pharmaceutical Industries (now Mitsubishi Pharma)2, while they were looking for new cancer drugs. FTY720 instead of anti-tumor activity, showed immune activity. That, along with its somewhat unusual chemical structure, stirred the interest of researchers at Sandoz—the company that merged with Ciba-Geigy to form Novartis in 1996.

For anyone interested in Fingolimod and the science behind it, it's worth the read.

Personally, I still say I'm glad it's in pill form and I don't have to gag one of those down...especially now that I know the fungus preys on insects and springs from their carcasses.

Excuse me while I go gargle.

Is it MS or is it OA? (Old Age)

It's so easy, when you have had MS as a companion in your life for several years, to blame everything that happens health wise on the misbehaving beast. But I have wondered more and more as I slide down the backside of the hill on that slippery slope to Old Age, if maybe some of this stuff would have come along anyhow.

For instance, my hips give me grief. Not the size of them, because fortunately I'm not overweight at 120 lbs. and 5'3" tall, but the creakiness (for lack of a better way to describe it). I get up in the morning and with my first Frankenstein, stiff-legged steps, I try to shush my joints from waking the entire neighborhood as I snap, crackle, pop my way to the bathroom.

I blamed it on the MS for causing me to need the steroids since every time I am on them I have incredible joint pain as I am tapering off the prednisone. My last bout was in May of '07 and it took forEVER for my hips to let me sleep through the night again. I thought I was doing fine -- I even spoke with my PCP and we mutually agreed that I could forgo the X-rays he had written me an order for since I was not in any more pain.

Then we went to Georgia at Christmas to see the closest thing to in-laws that I have -- my boyfriend (of 13 years)'s parents. It was downright cold up there where it's closer to a non-tropical kind of climate than north Florida is. Plus I slept in a strange bed that felt suspiciously like a cereal box full of cement with a sheet over it.

After 2 nights of agonizing torture, I was left waddling around wishing I'd brought the cane. We always go up there and wish we'd brought something you would think no person in their right mind would leave home without... like our son's nebulizer (breathing machine for asthma) the last time we went up. Turns out the "in-laws" had a couple new dogs and our son, whose asthma has been dormant since forever, started wheezing. We cut that trip short and high tailed it back to Florida.

Anyhow, here I was waddling around and explaining that my hips act up now and then due to the MS and so it's just something I'll deal with and get over, no doubt. The 3 hour ride home didn't help matters. I was so stiff I was practically stuck in a "sitting" position for days after that. It was a full week before the pain subsided.

Now I have figured out, to an exact science, the position my body must be in during sleep. Almost a fetal position with a pillow between the knees to keep legs aligned with hips, and always starting out on my right side. No matter that I wake up twisted at the waist, pillow on the floor, one knee in the air and the other leg flung out to my side at 90 degrees. works for me.

But as I creak around the house in the mornings I often wonder if the noise, pain and stiffness should really be treated as a product of my MS or is it just Old Age. For some stupid reason if I blame it on the MS it makes me feel better. I like having one fear to face. I'm not ready to face Old Age on top of everything else....there's no cure for IT either. Well, technically there is, but it's the same cure for MS and that's not an option at this moment.

Friday, February 15, 2008

Head Cold Germs Under a Microscope

Increased chance of upper respiratory infection

Of all the potential side effects the FTY720 could have had, this is the one that I spent the least time fretting over. Things like going blind worried me worse. Come to find out, maybe I should have just stocked up on vitamin C, Kleenex, and cough drops. This is getting ridiculous.

Before starting the trial I might have had one good head cold a year. I have a kid in grade school, so colds brought home from that seething pool of germs (the school, not my kid -- he's just the carrier) are to be expected.

This, however, is cold #4 since starting the trial 6 months ago. Enough already! I get the point. My important cold fighting part of my immune system is being sequestered in my lymph glands. Held back from fighting the good fight like I'm imagining they want to. I can just see the little tough guy T-cells banging on the lymph gland walls saying "Let me at 'em!! I'd give 'em what for if I could!"

All I know is that it seems like if someone sneezes in the same room I will have a head cold with raw throat, runny nose, fever and aches and pains within 24 hours. Never mind that theirs is only from body doesn't seem to care. It's party central for all head cold germs apparently. "Hey! Party at my place -- my T-Cell parents are gone!"

At least having all these colds has done one good thing for me. With each new cold, my panic over the possibility of a new relapse being triggered has lessened. With the first cold I squinted my eyes shut tight, plugged my ears, and braced myself for the KABOOM! of a new relapse descending on me but, like a dud of a fire cracker...nothing.

I'm almost to the complacent point of thinking my MS attacks are a thing of the past. If I could trade numbness, burning pain, spasticity and loss of balance for a head cold once a month or so, then bring it ON! I'll gladly make one of those candy necklaces out of cough drops and buy some designer hankies if I could make a trade like that.

Of course I know it's just a matter of time and I will slide into an inevitable relapse, but for now denial is sweet. Before Fingolimod I didn't have the luxury of ever going long enough between relapses to build up a believable case of Denial.

So join me in a chorus of sneezes and coughs while we say the pledge of allegiance to Fingolimod. I'm hooked on the stuff as if it were cough medicine. Oh wait, it seems that's just what it is -- medicine that makes you cough! :-)

Friday, February 8, 2008

My New Project

It's not much to look at, as message boards go. But I've been troubled in the past couple of months by changes that have taken place in various spots on the internet. So I figured since I have the knowhow to manage one of these beasts, why not start my own?

With a big hearted webhost name donating the space, I decided to create a gathering spot for any and all MSers, their family, friends, care partners, medical professionals and anyone else who wants to join and contribute.

There's nothing there right now except some examples of me talking to myself, but I would love to have those of you who follow this blog (you know who you are!) invite all your friends and come on over to my place.

It's called mainly because all the good names were taken and I was tired of trying to find available ones. If it's not proper English, I'm least it's catchy and sort of follows along the trend I started with Fingolimod and Me.

So while you are blog hopping, take a minute to stop by and say hi. Think of it as your chance to have a say in what an MS message board should be, instead of joining one already in progress. Post whatever you like and make suggestions...I'm all ears.

I have one section I have made " regional" -- so that people from that specific region can share upcoming events and get togethers. Unfortunately the only "region" I have so far is my own -- NE Florida. If you want your area added, just PM me or leave a comment here.

I know there are a lot of message boards out there, but some are so big, and some are so clique-ish. I just wanted to start one where we are all newbies and get to know each other and share stories and info.

So come on over when you get a chance! And be sure to mention it to all your other MS friends. I can't spam message boards with invites, and I wouldn't want to. I just don't have any other way but this blog to get the message out.

Don't leave me whistling in the dark by myself over there, okay? Come say hi and I promise I'll show up and welcome you. :-) I'm putting out the welcome mat and I'll leave the light on for you.

Monday, February 4, 2008

Possible side effect of FTY720?

I'll be going for my 6 month checkup on the 21st of this month and I think I have a question to ask...

Up until now I have sworn there were no side effects, but it occurred to me the other night that maybe there is. Sometimes when I am trying to fall asleep my heart starts racing. I can feel my pulse beating fast and I feel kind of like I've been power walking or something.

I can lay there and calm myself back down and finally doze off, but it just hit me last night when this happened that "Gee, maybe this is some sort of side effect??" I'm not too quick on the uptake, so sometimes things take longer to sink in for me.

Only thing is, my mother has the same thing happen on occasion so I always thought it was just a familial strange thing. We have several of those.

But ever since I started this study, when my pulse was initially 80 and dropped to 64, my pulse has never reached 80 again that I was aware of... until the other night.

I'm not sure why there is the initial drop in heart rate, or why it would affect one's heart at all, but I'm thinking I better make a note of this and bring it up on the 21st.

Of course, I wouldn't be a true hypochondriac if I didn't lay there in the wee morning hours and worry the heart racing thing to death. I darn near got up and tried to hunt down my Xanax at 3 a.m. just because I had almost worked myself into a panic attack.

However, recognizing what I was doing, and deciding I was more tired that I was panicky, I opted to roll over and get more comfortable. Before long I was sound asleep.

This morning, with my heart rate back to "normal" and not feeling like I've walked a mile, I have a new thing to concentrate on. My hands are tingly and trying to go numb. I'm not jumping to any MS conclusions tho... I've noticed if I hold my neck in a certain position I feel better and my hands don't tingle. I'm pulling for Pinched Nerve.

Didn't mean for this post to be a laundry list of tics and twitches, but I've never had a bad thing to say about Fingolimod (other than saying that name has GOT to go!) and it wouldn't be fair not to report something that seems questionably like a side effect.

Really, tho, when you see commercials on TV for everything from birth control pills to antidepressants where the fast talking voice is smoothing over the probability that you could have overwhelming urges to commit suicide or gamble, or you just might die...well, this seems mild in comparison. And the FDA already APPROVED that stuff.

So if this is a side effect, as long as it's not actually damaging my heart (hey! did I just think up a new thing to worry about??!) then I can handle this "side effect".

Side effects I wouldn't mind but haven't yet experience:
1. Way more energy coupled with a tendency to want to clean.
2. Enlargement of the mammary glands.
3. Reduction in waist size with the involuntary toning of muscles .
4. Reversal of hair graying.
5. Spontaneous ability to speak and comprehend any language I hear.
6. Gambling urges while having premonitions of winning poker hands.
7. Rational Thinking
8. Disappearance of any sign I've ever had MS.
9. Tolerance of bad TV shows.
10. Sudden urge to create gourmet meals coupled with the sudden talent to do so.

Like I said, I wouldn't mind those side effects but you don't hear about them too often.

All in all, I'm still on the side of those who are in the "Sings Praises of Fingolimod" camp. (Be still my racing heart.)