Multiple sclerosis, Treatment

Magical thinking

I’ve pretty much stayed on the conventional medicine path for my ailments, whether it be bronchitis (Z-Pac to the rescue!) or multiple sclerosis (interferons). I mean, remember my early research into MS treatments?

Much has been made this past week about Steve Jobs’ decision to forgo surgery and use alternative therapies to treat his pancreatic cancer in the early stages. When he finally relented and had the surgery, it was probably too late, his fate already sealed.

His was a “magical thinking,” i.e., outright denial of the crappy health circumstances he found himself in. It worked for him in business as he pioneered device after device that had never been envisioned before Apple made it so. But that didn’t quite work out in real life.

He also didn’t want to be cracked open and operated on because of how invasive surgery would be. Which, I get it. I hate hospitals and MRIs and spinal taps, so I can’t even imagine how awful chemo and surgery and radiation can be.

So what Jobs opted for were alternative therapies — a better, vegetable-based diet, spiritualists, macrobiotics.

I can see where those might be perfectly fine preventative measures, but once you are fighting something as insidious as cancer, or even MS, they are no match for the disease.

I don’t buy that cancer can just go away with a dose of positive thinking and healthy eating. You’ve got to bring out the bigger guns.

Same with MS. I don’t think that the daily vitamin regimen alone will clear this condition right up.

Does a better diet help? Sure. Are vitamins a part of a complete approach to treating MS? Of course. But they can’t be the only thing.

Is magical thinking enough?

Never. And it’s naive to ever believe it is.

But it helps.

 

 

 

 

Multiple sclerosis, Treatment

Double B

I’ve taken my health into my own hands.

Which is to say my shot regimen has changed a bit. Instead of stomach, leg, leg, arm, arm, cheek, cheek, I’ve decided to go stomach, stomach, stomach, cheek, cheek, cheek, cheek.

Head, shoulders knees and toes, knees and toes. If only there were a catchy song for this. Belly, butt, butt again, butt again …

This is to avoid the sort of non-fat less fatty parts that were giving me so much grief. The welts on my legs and arms after the shots would linger for days at a time, and I was sooooo sore. And I’ve read and heard where other Copaxone users do this.

That’s not to say the new approach is all peaches and cream.

As I told my friend the other day, “My butt itches, but not for the typical reason.”

I have no idea what I meant by that. But we laughed anyways. And I scratched. Alllll day.

And in the stomach, the injection sites are right around the waistband, which is no good. More scratching. Which can’t look good. And there’s no way to be inconspicuous about it, unless I were to head for the bathroom every time the urge was there. Seven-year itch? More like seven minutes.

And I’ve been tempted to just go all Thanksgiving and loosen a button or two, hoping to alleviate some of the friction.

I might have to wear nothing but dresses, or worse, elastic, from here on out.

At any rate, I’m going to try this system to see how it goes, even if it’s not ideal (what about MS is, though?). I might work the other areas back into the rotation.

For now, though, it’s the Double B — belly and butt.

 

Multiple sclerosis, Treatment

Hit me with your best shot: Comparing Betaseron and Copaxone

Switching MS treatments has been more of an adjustment than I thought.

I figured a shot was a shot was a shot, right?

Wrong.

In a layman’s way, I get how Betaseron and Copaxone are different — the former is an interferon that works by reducing the ability of inflammatory cells of the immune system to enter the central nervous system, while the latter is a polypeptide mixture and induces the immune system cells to behave as anti-inflammatory cells.

OK, so I just ripped those from smarter-sounding sites. But I know they fight MS in different ways.

What I didn’t expect was just how dramatically different the shots themselves would be. Both are subQ, meaning they go under the skin and not any deeper. Both come with a handy-dandy auto injector, the magic wand of shot delivery. Both have strict rotation-site schedules. Both warn of long-term injection site problems (necrosis in one, lipoatrophy in the other). Both have about the same success rate (30 percent) in reducing MS flare-ups.

And neither is as fun as being on a trampoline to be sure. But then, what is?

With Betaseron, it was such a big production, like putting on Les Mis every other night in our dining room: The ritualistic mixing, the preparation (mental and physical), the deep pain that came and went in a matter of moments. The biggest side effects are flu-like symptoms, which I got a small dose of during my time on it. But I always made sure to take it right before bed so that I could sleep off the icky stuff.

There’s also the depression side effect, which is something I never gave much thought except in retrospect (as in, right this second). Am I happier now than two months ago? Maybe? I guess I thought my sadness was the result of my circumstances, but the argument can be made that my inability to cope or “get over it” pointed to a larger underlying issue. (It’s 2:30 in the morning — who doesn’t ruminate if they are up at this hour?)

But I digress.

Copaxone is an every-night shot. There is no 58-step preparation. This one is pretty much lock and load and go. Oh, but there is the whole problem of getting the right depth setting for the needle that comes down to how much skin you can pinch in the injection site area.

The side effects with Copaxone are definitely more immediate — a bee sting sensation at the injection site that can last anywhere from 5 to 20 minutes, tenderness, bruising. And those are the “good” shots. The not-so-good ones, which I’ve only had the once, cause flushing, chest tightness and symptoms similar to a heart attack.

Apparently, I hit a vein in my leg, which caused tinnitus and my vision to go into Fear and Loathing mode. I got really flushed and almost passed out. Thankfully, I didn’t have the other side effects and the episode lasted for about 10 minutes, tops.

Still, that was enough to make me want to walk run away from Copaxone for a good long time. But I won’t. I’ve since taken several shots with no problems, and I was given pointers on how (and where) to do the leg.

Another big difference? With Betaseron you rub the medicine in, which was a good feeling for someone like me who can’t leave well enough alone. Copaxone, you can’t touch the injection site, no matter how much you want to scratch or rub.

I’ll dutifully continue treatment, but I long for the day that I take a pill and be done with it. (Gilenya won FDA approval a year ago, but this is one case in which I won’t be an early adopter.)

 

 

 

Multiple sclerosis, Struggles, Treatment

C is for …

Copaxone, one of the disease- modifying MS drugs I will soon find myself taking. Also, a Class B drug, which is safe(r) during pregnancy.

Can it be this simple again?

It almost stood for chemotherapy, which is still on the table if I don’t improve and we decide to stop TTC for a few months.

It doesn’t stand for conception, at least for right now. Sigh.

C is also for complicated, which is certainly what my life has become this past year.

And for crazy, which I have most definitely become this year.

I wish C still stood for cookie.

It will always stand for chocolate, at least for this girl!

Multiple sclerosis, Treatment, Uncategorized

Reefer badness

I am intensely curious about the origins of quite random things — from Post-Its and sushi to wooden shoes and certain psychotropic drugs.

Really, who was the first person to think that smoking a plant was a good idea? The thought never would have occurred to me.

Cannabis sativa. Known colloquially as marijuana. Also goes by pot, weed, reefer. mary jane.

Think Hemp tuxedo. The Dude. Brownies. High Times.

And medical marijuana.

Those magical properties that give partakers the munchies, red eyes and a fascination with black light posters also help those with such diseases as multiple sclerosis deal with some of the painful, debilitating symptoms.

One of those symptoms is spasticity, in which muscles stiffen and sometimes lock up in a contracted state because the brain signal to relax never gets to them.

Sure, there are drugs of the pharmaceutical variety to take for these symptoms, but the side effects make them almost not worth it. The choice, if you can call it that, becomes deal with the spasticity or take the pill and enter a somnolent state shortly thereafter. It’s no way to go about life.

But there’s hope. Eight countries in Europe as well as Canada have approved a spray-under-the-tongue drug called Sativex (see the etymology at play here?) to help with this condition.

In the U.S.? Not happening. The drug has not been approved here, and it is doubtful it will ever be.

Sure, California and a handful of other states have legalized medical marijuana. In 2009, a Denver alt-weekly got thousands of applications for its pot critic job opening. Pot has almost become mainstream.

The official line of the National MS Society on medical marijuana is that more research is needed. It says study results are mixed and reported successes are largely anecdotal.

So for now, a lot of MS patients are waiting to inhale.

 

 

 

 

Multiple sclerosis, Treatment, Uncategorized, What was I thinking?

The shot heard ’round the house

I knew it was bound to happen. Nearly six months into treatment, I am experiencing serious shot fatigue.

We’ve not exactly been vigilant in following the when of the injection here lately. It’s supposed to be every other night, but I think we’ve gone about three days without doing one this past week.

The where is another issue.

My thighs are blooming with bruises — very Monet, yet very tricky to find a spot to prick myself that isn’t tender.

My stomach, usually an easy enough place to give the shot, developed some sort of allergic reaction last night.

So right now, me and the needle are not on good terms.

At our house, we refer to it as “shot night.” Which is a different animal to the “shot night” many might be familiar with.

For instance …

Shot night: It is primarily a spontaneous event, usually celebratory. Commences invariably after someone suggests, rather impishly, that shots are in order because: Someone got a promotion, a favorite sports team just won, someone finished school, it’s Tuesday.

Shot night, MS style: Not spontaneous or celebratory in the least. We have to plan around it, set aside a certain time for it, dutifully carry it out with no fanfare.

Shot night: Aspirin is needed the next morning because the room is still spinning.

Shot night, MS style: I load up on aspirin beforehand. The room still spins slightly the next morning.

Shot night: Wake up with hand stamp and something unintelligible written in Sharpie on an arm.

Shot night, MS style: Wake up with funny markings on whatever body part was up for the injection.

Shot night: Whoops of joy.

Shot night, MS style: Winces of pain.

Shot night: Can’t just do one.

Shot night, MS style: Don’t want to do even one.

Shot night: Concoctions include swirling of ingredients, taken quickly, followed sometimes by a chaser.

Shot night, MS style: Concoction includes swirling of ingredients, taken quickly, followed by a cold pack chaser.

Shot night: Vow to never do it again, even if it was a little bit fun.

Shot night, MS style: Vow to do it again, even if it was painful as all get-out.

 

 

Multiple sclerosis, Struggles, Treatment

CCSVI’m confused

I’m not a doctor. I don’t play one on TV, either. So to say I’m flummoxed by multiple sclerosis, in a clinical sense, is an understatement.

Which makes me like most laymen, but also those like above-average doctors, who have been searching for a cause/treatment/cure to MS for at least 150 years and have yet to make a breakthrough.

Let’s dispense with the medical jargon. I don’t want to type it and besides, I doubt anyone except those with MD after their name will care.

I grasp the underlying concept of MS — my immune system has gone haywire and is attacking itself. Cannibalism, as another MS blogger calls it.

I also get what my interferon treatment is supposed to be doing. Bottom line: It won’t stop MS, but it might slow the progression, and it reduces flare-ups. In about a third of the people who use it. Not great odds, but better than nothing, right?

I went with the treatment because it has been on the market the longest and it is billed as pretty aggressive, especially if you “catch” MS early enough. But it is in no way the fix. MS seems to march on regardless of treatment, slowed, sure, but determined as hell.

Enter CCSVI, or chronic cerebrospinal venous insufficiency. Essentially, blocked veins lead to inflammation which leads MS, or so the theory of Dr. Paolo Zamboni goes.

(He’s Italian, so I’m sure Zamboni is a pretty common name, but I can’t get over the idea of the ice resurfacer at hockey games and what that could mean for my neuropathways, scraping the bad stuff away to reveal a new, shiny surface for my electronic pulses to glide along).

There is so much controversy swirling around his hypothesis and the angioplasty treatment, which he has euphemistically labeled  “the liberation procedure.”

Yes, we’re all freedom fighters here. As though my myelin sheaths are being oppressed, and there’s a genocide taking place in my body and these tiny balloon battalions come in to save the day.

Actually, I kind of like that analogy, because it’s the only way I can make sense of all the medical mumbo jumbo. But does it work?

I’ve done enough research to know that the treatment is a gamble. I don’t know that I can weigh in much more than that, although plenty of others have.

And then I heard this on NPR on the way to work.

All MS treatment is some sort of gamble. We read the risks and then do it anyways because we hope against hope that it will improve our quality of life, that it will stop the progression, that it will keep us moving for at least one more day.

Would I do something with more risks, but with the possibility of a greater reward?

I’m not in a wheelchair. Maybe I will never be. But it’s a reality for many with MS, and it’s something that will always be in my mind and inform my decisions.

Right now, I’m comfortable with my level of treatment and ability (as comfortable as anyone with MS can be, I suppose). But if my situation were different, I’d probably consider more drastic measures.

Including the Zamboni technique? Probably not. But then, I don’t want to rule anything out.