Thursday, September 27, 2007

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.

Friday, September 21, 2007

1month checkup

I spent yesterday driving to Jacksonville for my one month checkup.It was sunny on the way up, sunny on the way back and only rained once -- when it poured cats and dogs as I parked at the hospital and made my way inside. Nice.

I had another Pulmonary Function Test which the tech said was "normal" again, just like the first one. Then I had another EKG which I didn't find out the results of, and more blood drawn.

I was supposed to have seen the neurologist this time but he was swamped with patients and between him and the nurse, they decided I could see him in 2 weeks when I come back for my next ophthalmologist appointment.

The way I'm figuring it, if there had been any issue with the PFT or the EKG, I'm pretty certain the doc would have made a point to see me. If he can brush me off for another 2 weeks I must be doing okay.

I got new shots and a new bottle of pills, so I am good to go.

I still awake every morning holding my breath and waiting for new symptoms to hit me. So far it's just the same old stuff (some days more pronounced than others) but nothing new.

I really wish I could let out a huge sigh and relax and just enjoy being alive. There is just this constant "what if" feeling in the back of my mind and I'm always uptight. Geeze, life is one big "what if"... I really should just count my blessings.

#1 on the list is that the 1 month checkup was unremarkable and routine. That's a big blessing, right?

Tuesday, September 18, 2007

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.

Saturday, September 15, 2007

Welcome members

If you are reading this and you have come from 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. :-) -- the rudest place on the net!

I saw by my stats that I had a LOT of hits to my blog from a place called "". Curious, I went to see why. Someone had posted a link to my blog as if to share their prospecting find. Someone replied to that post questioning what Fingolimod was.

I decided to share my knowledge from the unique perspective of someone in the clinical trial only to be called a liar. The very knowledgeable folks at this investment site seem to know for a fact that all phase III trials are for 24 months. Hmmmm guess I read my informed consent wrong. It details specific tests and expectations only covering the next 12 months.

I go back to see if there are any replies and find that some NICE person says they want a link to the trial info. Someone else, (NOT SO NICE) decides to provide a link to the wrong trial and quote the trial as saying it's 24 month. Well, gee... YOU'RE RIGHT! That trial IS 24 month, but it's not the one I'm in. Duh!

Man, I would love to sell you some waterfront property out in AZ. The way you do your research is impeccable. (That's scarcasm, again).

Maybe I'd better contact my neurologist who is the lead investigator for the the North Florida arm of the trial. He should know that the investment people over at say it has to go on for 24 months. That may throw all the time line off.

If you came here from investmentvillage and are reading this, GO AWAY. You people know everything and don't need anyone telling you any different. Don't waste your time reading a first hand account of someone taking the medication because it's all lies. I just like to spends a few months dreaming up fake scenarios about the tests and everything to amuse myself.

If you are from investmentvillage and don't concur with your rude board mates, then my apologies. I was only trying to offer information that someone seemed interested in getting. Because it didn't come from another investor, I guess it's no good. Sorry.

If you are one of my usual readers, please ignore this post. I will return to my regularly scheduled program shortly. :-) Just had to get it out of my system. I'm a shy, nice person who was only trying to make friends and supply info to some people who came to my blog. I didn't know I was going to be called a liar and not even get a nice "hello and welcome!" first.

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!

Tuesday, September 11, 2007

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:

Monday, September 10, 2007

Hey Novartis! Some name suggestions for you!

I just can't see an MS commercial on TV with beautiful people engaging in idyllic scenes of active living with the words "Fingolimod : Take your life back!" on the screen.

You guys at Novartis are great when it comes to making the medicine do what it does -- I'm not questioning you there! It's just that, let's face it, you don't have the best marketing sense, in my opinion. I mean, look at your pharmaceutical company's name. Novartis?? That sounds like the inflammation of some little known internal organ, sorry.

So, I've decided that I will lend you my many years of marketing expertise that comes from owning a printing and sign business and helping my customers think up catchy tag lines. Don't worry, I won't charge you (unless you actually use it and then this blog entry becomes Exhibit A in the lawsuit). Anyhoo...I've got a few names you could try.

Remember, you're competing with trendy names like "Tysabri" whose nickname has become "Ty" and everyone loves to say it. It's got to be something trendy, refreshing, and gives a hopeful feeling to those taking it without in any way implying a shred of hope. hmmmmm

MS-be-gone is out. Too much of an absolute statement however much we with MS would like to buy into it. I see lawsuits over that one.

Brighter Tomorrow has potential although it's currently being used as a name for an MS grant program I think. But what if we shortened it? Brittom? or Britrow? No... it loses it's positive impact and sounds like something you might find when cleaning a fish.

I know, how about we go back to the Chinese roots of the fungus? Maybe there's a name there to be had. Then again, considering the Chinese angle (in the minds of Americans, Chinese = recall) and the fungus angle (what's catchy about a fungus... unless it's the fungus you are catching?)

How about "Nerve-On, applied directly to the spine!" No, those commercials are so annoying.

I'm going back to what sounds good. Something that smacks of "vitality". Vitameatavegamin is out, I guess.

Seriously, tho... I like these:

Gold Finger (because that's what Fingolimod sounds like to me and it reminds me of James Bond).

Vitalease (combining "vitality" with "ease" as in "ease of movement".)

Proreverse (as in "I'm all for a reversal of my MS damage!")

Jerimod (just to throw my name in there for posterity.)

Anyhow, all I'm trying to do is show you big guys at Novartis that if you are thinking ahead in a positive fashion to the days after FTY720/fingolimod is approved, then you have to get on top of this now. Give us a name we'll be able to pronounce and be proud to say when someone asks us what disease modifying drug we are taking for our Multiple Sclerosis. Please don't keep the Fingolimod label, alright?

Thursday, September 6, 2007

If this gets approved, I'm in heaven!

I was just thinking about how nice it is that I only do a shot once a week. I'm sure those of you who haven't had a shot since getting their last boosters as a child would beg to differ, but for people with MS, shots are a part of reality. A necessary evil.

Since getting diagnosed in '99 I have had to stick myself on a daily basis (well, okay, my family knows that I fell off the shot wagon for a while and then got back on). Copaxone was the MS fighting elixir of choice. A tiny needle the goes only into the fat just beneath your skin. But the medicine it delivered was like battery acid. The stuff burned and there's just no way of getting around it.

At no time in the history of MS medications has a person been able to take a pill once a day that is designed to modify the course of the disease progression... until now. True, I can't pull the sheet out of the box and read about side effects or what not to take it with, etc., but I take my one pill a day and that's it. Well, except for that once a week shot, but who's counting? I do it Monday morning and by Monday afternoon I'm over it. It's done, gone, forgotten. For a week!

From what I have read recently, Fingolimod may even be able to repair previous damaged caused to nerves by multiple sclerosis. If that's the case, not only should I have fewer relapses to look forward to, but maybe I'll get some feeling back in my feet and not be quit so off balance.

It will be a sad day if, at the end of this study, Fingolimod doesn't get FDA approval. I will miss my little brown pill and all that it represents to me as a future that looks so bright.

For now it's looking good. No side effects and no relapses so far. You would probably say that two weeks isn't long enough to say whether it's making a difference in slowing the relapses, but consider this: I have been having relapses on a continual basis every three months for the last two years. I couldn't catch a break. Just when I would start to heal from one flare, another one would wash over me. Like an ocean of symptoms that threatened to drown me, I could get no relief.

My last round of steroids (which is all they can do for you to quiet down an acute attack) was back in June of this year. This is now September and I am having no signs of a new attack. All is quite on the MS front. I hope it stays that way, and with this medicine I'm pretty confident I will.

How nice it is to finally be able to get back to the business of living. Just having a regular life without constantly being nagged by your body that you have a disease is a nice thing. If Fingolimod gets approval I will be the happiest woman on earth. Well, the only request I would have would be to give it a jazzier name. Something like "Gold Finger" maybe? James Bond fighting M.S. -- I like the visuals.

Saturday, September 1, 2007

Worrying myself sick

Is it really possible to make imagined things become real if you really, really believe in them? It didn't work for me when I tried it with Santa Claus or winning the lottery. But I do feel there is power in positive thinking.

For instance, I'm walking just fine these days and it is because I am doing well with my MS... or at least I think I am. Could it just be that because I don't have all the facts and I only perceive that I'm doing well that I am a walking miracle? If so, I don't want to know the results of all the MRI's I have had lately.

It could be that the reason they've been "lost" or never received by my new neurologist isn't due to miscommunication between hospitals, but rather I am a curiosity being studied by a team of doctors. Maybe they have seen my MRI's and know that I should be a vegetable confined to a bed, but realize that because I don't know this, I am still up and walking.

In that case, I don't want to know. I believe in the power of positive thinking because I have seen the power of negative thinking. I do it to myself all the time. I can talk myself into a panic attack quicker than you can say "OH NO!". And I even have this detached, analytical part of my brain that sits back saying "there you go again... you brought it on yourself."

If it's true that negative thinking can effect your health, then why can't positive thinking? Today I'm practicing "The Little Engine That Could" alternative medicine. I am going to feel better, and thus BE better, because....

I think I can, I think I can, I think I can.

Just between you and me, I'm sick of worrying myself sick and I think I'm going to give it up as a hobby altogether. If anyone has any great links about the power of positive thinking that they'd like to share with me, I'm all ears. Please post them as a comment.