A little love…for me

I’ve written before about how bad I am at optimism.

I know it’s nothing to be proud of. I know our thoughts have a direct impact on our lives and how we experience the world. I hate being so hyper realistic bordering on pessimistic. I really do. I just can’t seem to get myself to the place where I can allow myself the kind of peace that is supposed to come from thinking happy thoughts.

But sometimes? Sometimes one or two positive thoughts sneak in at the strangest possible times. Like today, for example. I am going out on a limb of positivity right now to make the following bold claim: I think the walking drug works for me.

There. I said it.

I have no idea how two little pills every day could have such a magical effect. It makes my brain hurt to think about how a chemical substance could trick my brain into thinking I can walk like a normal human again. But it appears to be doing just that. My legs feel like legs instead of what they usually feel like (something akin to alien limbs controlled by a will entirely their own that don’t like to bend or move properly).

According to drugs.com, Ampyra “is used to improve walking in patients with multiple sclerosis (MS). Dalfampridine produced an increase in walking speed in clinical trials. Exactly how it works is not known. It is thought to increase nerve function.”

“Exactly how it works is unknown.” Huh. That’s not shocking to me at all. What’s shocking to me is that it actually seems to be working at all. The Great Scott told me that some patients experience positive results from taking Ampyra but not all. He said there was about a 30% chance it would work for me. That didn’t sound like the best odds to me. But goddamn, if it doesn’t appear to be working pretty well. I might be the 30%! I almost can’t believe it.

Now I’m also characteristically realistic about this potential good news. I know it might not work for long. It might become less effective over time (TGS warned me of that). Some other horrible outcome could rear it’s ugly head at any time and I’d just have to deal with that. Drugs are complicated.

For example, Modafinil, the other wonder drug that I take daily for my overwhelming fatigue is definitely messing with me and not in a good way.

Modafinil works to keep my brain alert and it really does just that rather magically. But it also seems to make a lot of things work a little too well because I’m all of the sudden anxious, full of anxiety, unable to stop obsessing over strange things, maybe even a tad paranoid. It also messes with my sleep – this cannot stand. I need all the sleep I can get. I find it hard to read. That, too, is completely unacceptable. I’m struggling to finish book #4 of 2017 and this is not helping me reach my ultimate goal!

I wanted the drug to give me energy not make me hyper vigilant and notably crazier than normal. I’ve decided to lay off of it for a few days to see if I notice a change back to my version of “normal.”

The thing about the human body is that it is a vast, complex maze of interconnected systems and parts that nobody really truly understands. They try. They really try. But most “medicine” is an elaborate process of trial and error. Doctors know a lot, I realize that, but even the best ones will tell you that what they don’t know boggles the mind. The fact that I currently take more than one drug daily that uses the phrase “exactly how it works is unknown” to describe its mechanism of operation in the human body is a little bit mind blowing to me. But there you have it.

There are more drug adventures coming for me in the near future.

I have my last Tysabri infusion in March and then I am going DMT-free for two to three months. I will be on ZERO major disease modifying drugs for two to three months. This fills me with fear unlike any other I’ve ever known. I’m having horrifying visions of myself crawling around on the floor or sleeping 15 hours a day for three months. Then today while chatting with Cheryl, my therapist with MS, a different thought popped into my head..another oddly optimistic thought.

Maybe I will feel better without the big bad drug. Maybe it’s making me feel worse while it also appears to be keeping my disease in check. The side effects of the DMTs are hard to separate from the actual symptoms of MS. The Great Scott doesn’t think this current drug is the one for me. He seems much more optimistic about the potential for the “new goo,” as he calls it.

The whole process of modern medicine is about trial and error! You just keep trying and trying until you find the magical combination of things that work for you.

Instead of feeling frustrated by that fact, like I usually do, it sounds oddly hopeful to me tonight. I’m giving myself a little Valentine’s Day love and allowing myself to believe that the right combination is out there for me.

I will find it. It will help me. I mean, look at me! I seem to be walking.


All drugs are not created equal

Color me informed.

Many of you know that I’ve recently started taking Provigil (modafinil) for my MS-related fatigue. The drug isn’t technically approved for this use. It is technically approved for a diagnosis of narcolepsy but it is commonly used off-label for us lucky MS patients who can’t muster the energy to make it through a regular work day without some help. My insurance company rejected me. They rejected two appeals that left me to either sleep 16 hours a day and struggle to continue working (not an option) or pay out of pocket (luckily an option).

My local town pharmacy that I love that fills all of my many scripts was charging me about $11/pill. I found out from my neurologist’s office that I should look into getting the drug at Costco. Some other patients get it there, it turns out, and the cost is significantly less. I checked it out. It was so significantly less that I was incredulous and didn’t really believe it until I had the pill bottle in my hand. Costco was charging me $1  pill and I thought, “YES! Finally, there is something reasonable in the world of health care.” And I happily joined Coscto (even though I didn’t have to, I felt like I should). Then I happily took my $1 pills for about two weeks.

I started to notice myself struggling again. The days were hard again. At the end of a work day, I was struggling to stay awake much past 8PM. I was struggling to get through my basic household chores…all of the usual crap. I thought,”Shit. I guess I’m one of the lucky ones who don’t respond well to Provigil. It must just not work for me.”

One morning I noticed I had some of my old pills, the original prescription from my local pharmacy, in my nightstand. The pills look slightly different. I remembered the sticker I sometimes see on my pill bottles “different manufacturers pills don’t all look alike.” I noticed that both scripts were for Modafinil 200mg but they came from different manufacturers. Hmmmm.

I’m just desperate enough at this point. I figure, “Hell! It’s worth a shot!” So I took one of the old pills. Totally thinking it would be the same experience and I would end up sad and tired and run down yet again.

But that didn’t happen. I found myself energized again. I felt that weird spring in my step that I’d felt the first time I took Provigil – back when I noticed that my legs actually seemed to respond better when I took the drug. I could walk a little faster. I still had to be careful but it was an improvement for certain.

I was a bit skeptical. Maybe I was imaging this! After all, generic drugs are all the same! Haven’t I been told this since the beginning of time? I thought they had to deliver the same degree of efficacy as branded drugs. I sincerely thought those were the rules. I went down that familiar path that I always seem to find – the one where I question the experience of my own brain and wonder if I’m making the whole thing up!

But I wasn’t willing to give up that easily. So I started Googling and making phone calls. It was a harrowing experience that took hours – calling one pharmacy. Then the other. Calling back again. Checking pricing. Checking manufacturers. Calling back again. Getting new pricing. Calling back again. For three hours. Three painful hours of my life I will never get back. But the discovery was mind blowing.

The Costco generic came from one manufacturer, my local pharmacy generic came from another. Costco could get the original generic, the one that worked for me, and it would cost $110/month but would have to special order it for me each month. This would require me to call them two weeks before my bottle was empty, each month. I have so many drugs on so many different schedules that I was already planning iPhone alerts for the entire mess.

So I call my local pharmacy back and explain the whole thing (I like my pharmacist…he wanted to get to the bottom of it too). He agreed to match the price. Easy peasy. But wait. Not so easy. Because Modafinil is a controlled substance, you can only transfer the script once. So now  I had to call my neurologist’s office (again) and get a brand new script that my local pharmacy would then be able to fill.

It was exhausting. But it is now resolved and I am grateful that my local pharmacist took the time to explain the realities of how different drugs from different manufacturers behave differently. The manufacturer of the Costco drug was one my local guy didn’t even have in his system. He’d never heard of it. Turns out it is a company in India (not that that means anything – a lot of drugs are manufactured overseas) but this wasn’t one his wholesaler offered so he never considered buying it. I guess there’s a chance that it works for some people otherwise wouldn’t they have stopped selling it? But it totally didn’t work for me. Like night and day not working. Like no effect at all, not working.

This led me to think about old people.

I know. It’s a leap. But stay with me. I get paid to solve problems for a living. My job is to fix complicated situations, get to the bottom of complicated problems – to dig until I find the right answer. Not everyone has the wherewithal to undertake this particular trip down the dysfunctional health care system rabbit hole. I imagine some people would have just given up. Or chalked it up to their imagination. Or assumed the damn drug couldn’t help them!

Lots of old people probably don’t have people in their lives who can figure this kind of crap out for them mainly because it takes a whole lot of freaking time and energy. If I weren’t desperate to solve this problem, I would have given up too. I didn’t give up because I can’t face a life where I can’t get through an average day or do my job or do anything more than work, sleep, work, repeat. But guys. This is literally insane. Nobody should have to become a part-time private detective to find a drug that actually works that they can actually afford.

I’m relieved to be back on the good stuff. I’m grateful that my local pharmacist worked with me and talked me through it. I’m most grateful that I can afford to pay the higher cost because this drug is kind of life changing and now that I know it’s out there I’m just not willing to not take it. I know I’m so much more fortunate than so many patients who just can’t afford their medications.

This whole experience gave me pause. It made me realize that having a disease is hard. But that’s just the beginning. Figuring out the maze, the absolute mess, that is our health care system is like having another disease for which there is no cure. You have to do the work to get what you need and you also have to do this work while you physically and mentally can’t fathom how to make that work happen.

I have a disease that causes brain fog, debilitating fatigue and pain. It doesn’t really put you in the mind space of preparing to battle The Man!

But battle The Man, you must. Otherwise The Man will always win. I can’t let that happen.