Having MS is a bit like tiptoeing along a double-edged sword.
On the one edge, I've been disparaged by perfect strangers for being a "pill popper" (their term). On the other edge, because there are so few treatments, having a chronic incurable condition like MS requires that you do everything you can to help yourself, and that means often taking risks. Damned if you do; damned if you don't.
On being a Pill Popper
I take a crazy amount of meds everyday (maybe as many as 21 different ones). Here's how it breaks down:
Prescriptions: 8 (some twice a day, some once a day, some as needed)
Why do I take these?
1 is a Disease Modifying Therapy (DMT) for MS
4 are for nonMS health concerns or maintenance
2 are to mitigate MS symptoms
1 is to relieve side effects caused by the DMT
OTC medications: 3 (as needed)
Why do I take these?
All to relieve side effects caused by the DMT
Vitamins and Minerals: 4 (some twice a day, some once a day)
Why do I take these?
2 are for general health
2 are said to help relieve MS symptoms
Probiotic: 1 (twice a day)
Why do I take these?
To relieve side effects caused by the DMT
Supplements: 5 (some twice a day, some once a day)
Why do I take these?
2 are said to help relieve inflammation
2 are said to help with energy metabolism
1 is said to help with focus and clarity
Of all of these, only one of them is considered a
"black box" medication, meaning it has the potential for high-risk side effects. Fortunately, I don't have those side effects and can't, in fact, function
without this
life-saving medicine. And my liver tolerates it just fine (same with my DMT).
Note that, without MS, I wouldn't be taking as many as 21 different pills a day, I would be taking as many as 6. That's the difference between a snack and a meal, folks. (Yes, please laugh, I'm trying to be funny here!)
If I were of the traditional only approach to treating my MS, I would not be taking any of the supplements. But I am of the ilk who likes the idea of fighting a war with all the weapons I have at my disposal, so I take supplements as well, as part of what is called a complementary therapies approach to MS.
There are some people who only do the complementary therapies approach. If I were to do this, I would be taking only my nonMS prescriptions, plus vitamins, minerals, probiotics and supplements, ringing in at 14 meds a day.
I'm running a numbers game here to show you that there really isn't a good argument for going with either traditional only or complementary only, if you are trying to avoid popping pills. If you're going to take 14 meds a day in the complementary approach, it's not that big a stretch to add the 7 others to my daily "pharmacy salad," as I like to call it.
This is a matter of contention between MSers, which is why I bring it up at all.
Using or not using medications to support management of disease progression or treat and relieve symptoms is a highly personal decision. I know people who take many, many more pills than I do. And I know a few who don't take any. And comparing oneself to any of these people in terms of outcome is about as useful as comparing apples to oranges to bananas to grapes because MS affects us all so very differently.
Still, people will impose their views (and I suppose I'm doing the same just by posting this blog entry) and these views will make others fearful or less confident in their choices... or downright defensive.
Allow me, at this juncture, to return to the "Pill Popper" expression...
I recently ran across a grocery checker who was trying to talk a shopper out of buying a supplement and, instead, save some money and buy a similar item from the produce department. "You don't need these," she said with such a cavalier attitude, leaving the shopper embarrassed and speechless and on the spot. "You don't need to be a pill popper." (They bought the supplement anyway. Good on them.)
So riddle me this... is someone who takes medications and/or supplements, for their own well being, now considered a "pill popper?" I've always thought the term to be disparaging and referential to people using illicit drugs like bennies or Quaaludes or any other class of junkie throwbacks from the 70s.
Okay, well, guess what? If that's the case... I'm a pill popper. And I don't think that's a bad thing.
Back to the checker: I tried, tactfully, to turn that dialog around when she started checking my groceries and was still talking about how people really don't need drugs, they just need to eat right. As if by eating fruits and vegetables, all disease could be prevented and/or
cured.
Really? If that were the case, there would be no disease in the world. Right?
Sigh.
When I told her that I have a lifelong incurable chronic neurological condition that does not have a metabolic component, and can't be treated by diet alone, and when I explained to her that I know people who are lifelong vegans who still share my condition, and that we all MUST take pills in order to just function normally every day, she was the one left speechless and on the spot. I don't think I embarrassed her, I think I got her to pause and think about what she had said. Or, if I did embarrass her, I didn't mean to. She was gracious and said something to the effect that, "Oh, I never thought about that."
It's so important for people in our lives, even strangers, to stop assuming that every health issue out there is caused by some bad dietary habit we put upon ourselves, that somehow our lifestyle itself is the root cause of our own problems. I didn't ask for MS. I didn't do anything to give myself MS. I eat pretty healthfully, live a pretty healthy lifestyle. IT'S NOT MY FAULT.
Nobody ever thinks about the fact that disease is caused by more than just shoddy lifestyle choices. We have had the diet and exercise regimen crammed into our collective psyche for so long that we've stopped understanding how disease works, that you can be healthy and do ALL THE RIGHT THINGS then, WHAM,
still get hit with a heart attack or an incurable illness or cancer. I know people who fit all three categories. They would be really pissed to hear anyone blame them for their health problems. Let's stop blaming victims, shall we?
I do not think it is useful or even advisable to avoid taking medications (prescribed or otherwise) if you have MS; those in my life who I know personally and who decided to "go natural" are now crying regret, rolling around in wheelchairs; they cannot hope to reverse their progression because their condition has worsened beyond their somewhat treatable, manageable RRMS to a more severe condition that has absolutely no treatment. I don't know anyone, personally, who is doing better
without medications (in terms of disease progression). So I'm probably biased. But I've heard more cautionary tales from people who opted out and are paying a price for it now than from people who chose to use DMTs and whose choice made their disease progression worse. Symptoms and side effects might be intolerable for some, but no DMT is going to worsen your disease. It'll simply not work.
People will go the natural route because they have distrust of the medical establishment. Most of the time, this is caused by a general lack of health literacy and understanding of the complex system that is Western medicine. Often it's compounded by the ginormous volume of misinformation out there on the web, and our equally ginormous FAIL at media literacy to parse the good info from the bad.
Going back to my numbers, if I take 21 different meds a day, I can be (and have been) ridiculed by my own "natural" peers for being a pill popper. Except that they, too, are pill poppers, the difference being that insurance doesn't cover their cures, so they likely pay a whopping lot more for their meds than I do.
See how it can get ugly? And it does, trust me. The forums abound with ugly one-upmanship and competitive judgmentalism instead of being the support groups they were intended to be.
I'm a live and let live kinda gal. If you want to not take any meds at all and just smoke or consume marijuana for the rest of your life (that's an entirely separate contingent of MSers out there), feel free. Wanna take uber-strong doses of vitamin D and DHA? Go for it. If you want to cut all the dairy out of your diet, fine. But don't tell me my choices are wrong or call me a "pill popper." Just don't. It doesn't advance anything except division in a community that should be all about
unity.
About that Pharmacy Salad...
Supplements are drugs. No two ways about it. They are drugs which are not approved by the FDA as drugs, so claims about them cannot be held up by the FDA, either. This is why they are rarely, if ever, covered by insurance payers. Many supplements are also food products, like garlic or turmeric, for instance. But other supplements come from unexpected places, like bee sting therapy and compounds derived from Chinese hamster ovaries. Each separate supplement has its body of evidence (clinical and/or anecdotal) that can show both the promise and the pitfalls of using it in a therapeutic course.
I choose supplements based on my own ability to research not only their benefits, but their side effects and potential interactions with other medications. My neuro and PCP both have a list of the supplements I take and neither of them is set against any of them, based on what we all understand about their properties. So, despite the arguments made by "natural" MSers, medical professionals are not hands-down AGAINST using supplements. What they want is for their patients to be smart about what they choose to take or do to fight their MS.
On the Divisiveness of Diets
There's another faction of do-gooders who insist that eating a Paleo or Vegan or Swank or other restrictive diet will
cure MS. Yes, I said it.
CURE. They are sure of it because it makes them feel better.
Um, yeah. Eating better will always make you feel better, whether you have MS or a runny nose.
I have a naturopath on my team and he bristles at the notion of a detox or restrictive diet as a road to a
cure. He basically said this on the subject (my paraphrase) at a recent newly diagnosed MS seminar: All that detox or restrictive diets do is stir up all the muck and toxins you have been carrying around for years, which are probably harmless in their current state, that is, until you decide to do the deep cleanse. And then all that muck gets reintroduced into the system--the lymph, the bloodstream--and causes new symptoms which can lead to the patient feeling sicker than ever.
People, we are not cars... an oil change is not going to fix our MS.
Yet the headlines out there on the Internet point to specific diets as being
cures for MS. For some, going on a healthy diet has been a wonderful help, to be sure. But dietary choices do not impact disease progression, they only impact the severity of the symptoms you have. You can have MS and NOT have symptoms. The disease is quiet that way. If you're feeling good, then all the more power to you! You are probably in remission because that's how RRMS works. If you never remit, then you probably have something more severe. But people with RRMS do, in fact, have remissions. We cannot presume that just because we are in remission and feeling better we are c
ured, especially by means of a diet. Tests on a diagnosed MS will always show the presence of lesions or oligoclonal bands in the CSF. Sorry, I wish the news was better, but that is the reality.
There is no cure for MS.
The other reality is that there isn't a single diet out there that has been proven to be a workable treatment for MS. This resides in the fact that there will likely NEVER be long-range studies on large MS populations with regard for diet because they are too difficult to control. A short-range diet of 2-3 months for a limited population might uncover some suggestion of evidence, but you really can't then take that same experiment, put 10,000 people on it for 4+ years, and expect 100 percent compliance from the patients.
So, sure, yes, eat your veggies, eat your fresh fruit and your very lean meat and whole grains and beans and organics and stay away from all that processed crap (anything that comes in a box, a jar or a bag and has a bunch of other ingredients besides real food in it). That is called a Whole Foods Diet, and you know what? It's good for everybody, not just MSers, it's easy to do and you don't have to starve to feel better.
But if you want to go further than that, if you want to start throwing out the gluten arbitrarily, for instance... or if you start fasting for a week, or if you start cutting out dairy or meat with no guidance from a naturopath or a nutritionist... be prepared to muck around with something you don't understand. And be prepared to give up after a few months because, frankly, most of those diets are unsustainable and unaffordable. (I had to let my practical self in on this part of the conversation.)
Welcome the Snake Oil Salesman
The problem is really one of health literacy.
Eighty percent of people who visit the doctor's office will forget EVERYTHING their doctor told them, ten minutes after leaving the appointment. Of the remaining 20 percent, half will remember it WRONG. Only ten percent of ALL PATIENTS will do what they are supposed to do following a doctor's appointment. These are not stupid people, mind you. This large category (80 percent!) of the population is educated, makes money, lives in a decent house, eats three meals a day and sleeps in a bed. We are not talking about homeless people, or those with mental illness or those who are functionally illiterate here.
We are talking about... well... YOU, in all likelihood.
Instead, people like YOU (
this could describe YOU) will go home, look things up on the Internet, find claims that promise to fix certain health concerns, get advice NOT from a medical professional but from some forum somewhere or in Facebook where NOBODY is more invested in your health than YOU. And YOU will encounter very nice-looking websites that show how the medical community is broken and poisoned and that,
surprise!, the natural community (or the Bee Stings for Life community, or the MMJ community, or the Paleo community, etc.) has every answer YOU will ever need for
curing what ails YOU. And YOU will say, hmmm, maybe my doctor is wrong, because
who wants to deal with a diagnosis like MS? It might be better to deny the diagnosis entirely, follow a different path, with all these other people who claim their natural wisdom has
cured them. Thousands of other people, all of them perfect strangers with no medical background whatsoever, people who are just words on a screen, actually... they can't be wrong... Right?
Please don't read that last paragraph and think I'm against complementary therapies. Obviously I support the notion of supplements as a potentially helpful approach to treating MS; I use them myself. I also subscribe to the practice of yoga and meditation as a means for stress relief and wellness. I also think drinking water is healthy, as is regular exercise.
What I'm against are all the claims made--without any clinical evidence at any scale--that say YOU will be
cured. It's one thing to say, "hey, eat lots of kale and mustard greens, it will help YOU feel better." It's another thing to say that eating lots of kale and mustard greens will
cure YOU.
So please, people, be wary of promises and language that sells the idea of a
cure, especially when the same language has nothing positive to say about modern medicine. You have entered a different kind of marketplace then, where other people are going to tell you that pharmaceutical companies and doctors are making a fortune off your illness while, at the same time, trying to collect your consumer dollar by selling you something that has less than (or zero) the clinical proof of concept that at least modern medicine CAN offer.
Don't buy into the snake oil out there promoting
cures for ANYTHING. Any yahoo can build a beautiful website and hire a persuasive writer to sell you a gorgeous bill of goods. It's up to you to demand the proof, though, and that means entering every adventure into complementary medicine with a very healthy dose of skepticism. Demand clinical proof; ask to see tests that have replicated the results time and again; demand to know who is paying for the tests to uncover their biases; don't accept just one small experiment with 5 people. Read BEYOND HEADLINES about what others have to say about the up and down sides of a given complementary therapy. Look at product reviews in Amazon, even.
For instance, I thought kombucha would be a good way to go, but then I read a lot about what kombucha actually does, and what it can do to someone with MS, and how this can actually really mess with body processes in someone with MS, and I decided
No thank you to kombucha. My decision. I know others with MS who welcome kombucha as a treatment. Their decision. Not a risk I want to take.
Ultimately, what you do about your health is always going to boil down to you making an informed choice. Be skeptical, not only about complementary treatments, but about pharmacological ones. Ask questions of everyone, including your doctors. Demand answers. Don't be satisfied with the answers until you feel confident you understand the science behind them and feel satisfied you know enough. (Though frankly, you may never know enough. Be prepared for that, too.)
This is your health and your life; though you may not be able to
cure yourself of MS, you can certainly grab the wheel and steer your boat to the right course. It really is YOU who is in charge of navigating your own health, after all. It is not fated to reside in one doctor's hands. In fact, it should NEVER be left up to one doctor: it should begin with you and expand out to a team of experts and an even larger support system.
Last word of advice: don't make your decisions based on
shame (don't be a "pill popper") or
fear ("that shit will kill you!") or
ignorance ("don't you know anything about DMTs?"), because if you do, you run the risk of sinking your own ship when all you needed to do was plug a hole in the ballast.
