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 again...it's Carpal Tunnel.

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:
http://www.engelpub.com/News/Index.cfm?articleid=483828

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.

Holding my breath

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

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

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

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

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

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

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

Week Four of the Study

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

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

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

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

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

Welcome investorvillage.com members

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

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

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

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

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

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

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

Pinch me, I'm dreaming

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

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

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

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

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

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

National Multiple Sclerosis Society's commercial for raising awareness

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