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 really...how 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 www.MSWorld.org. 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 MSWorld.org 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 youtube.com 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:
http://www.medicalnewstoday.com/articles/41281.php
http://www.mssociety.org.uk/research/potential_therapies/fingolimod.html
http://neurologicalillness.suite101.com/article.cfm/2_oral_ms_drugs_in_phase_iii_study
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1309

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 in 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 guess was an optical cat scan. I had to look in this box while the 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.

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.

So.... 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:
http://www.medicalnewstoday.com/articles/41281.php
http://www.mssociety.org.uk/research/potential_therapies/fingolimod.html
http://neurologicalillness.suite101.com/article.cfm/2_oral_ms_drugs_in_phase_iii_study
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=1309