Sunday, October 28, 2007

Update on the clinical trial...

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

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

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

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

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

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

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

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

Saturday, October 20, 2007

Full Circle

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

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

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

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

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

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

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

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

Sunday, October 14, 2007

Great News!

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

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

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

Full story is found here:

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

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

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

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

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

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