More revelations about MS meds

Last night, I continued thinking about my neurologist’s visit after I wrote the other blog post.

A weird idea popped into my head which I haven’t been able to shake: when I talk about MS meds, I sound like an anti-vaxxer. I’m the Jenny McCarthy of MS. Maybe not quite that extreme, because there’s more evidence of vaccine safety and a lot fewer risks, but still.

I did space apart my kids’ vaccines after my middle son had a documented vaccine injury. I have never gotten a flu shot and neither have my kids. I’m a little wary and distrustful of the FDA because some dangerous meds and vaccines were rushed to approval, only to discover they actually killed people. So I tend to be skeptical (I think with good reason) but I usually give in anyway and try to control my risk factors.

But I noticed how many things my beliefs about MS meds had in common with the anti-vaccine movement. Such as:

• Nutrition solves everything. If you get sick, it’s your fault for not being strict enough about your diet.
• There is mostly only anecdotal evidence that nutrition and supplements are more effective than mainstream medicine.
• There is a handful of doctors who buck the mainstream, who are presented as the only unbiased source of truth.
• There are always documentaries following the renegade, self-styled experts who are taking on the mainstream medical community. It worked for them–it will work for you, too! (Have you tried juicing, by the way? How about essential oils?)
• There’s a heavy conspiracy theory element that says the mainstream medical community is all corrupted by money and that’s why they don’t even investigate whether these simple alternative therapies work.

I’ve been open to alternative medicine for as long as I can remember. For years, it was actually the basis of my writing career. And some of it really does work. I also know that good nutrition, stress reduction, and adequate exercise are important for everyone’s health, with or without MS. And most Americans do poorly on all of those fronts.

But if it were that simple, wouldn’t countries with better nutrition and lower stress (e.g. most other Western countries) have lower MS rates than the U.S.? Why don’t they?

If nutrition was all you needed to “cure” MS, then why has it been so difficult to replicate the work of people like Dr. Terry Wahls and Dr. Swank?

Why am I supposed to believe the small handful of doctors and their followers who say nutrition and supplements are the answer, compared to the thousands of doctors who say that the conventional medicine isn’t a cure but it’s better than doing nothing because it has extended the lifespan for people with MS by about 20 years since they were introduced?

The fact of the matter is that even though I’ve made major improvements in my diet (including having a minimum 5 servings of fruits and vegetables every day for more than a year), I’m still not getting better. I’m actually getting worse.

I already trusted my old neurologist because he didn’t push meds on me before. The fact that he did so this time was a wake-up call. He obviously sees more people with MS than I do. He sees what happens to people who don’t take the meds. I don’t. He said I had gotten noticeably worse in the past two years and would likely continue to do so if I don’t take the meds.

Given how rough the past year has been on my health, that actually terrifies me. He said I was on the verge of needing a cane now and would be safer if I had one. I already suspected that.

I know that meds may not work for me; some people still get worse even on the meds. I don’t know how I will afford the testing and treatments that go along with taking meds. I know I’ll have to put up with side effects, and I usually bail on meds pretty quickly (within a week or less) if I can’t live with the side effects.

I’ve often wondered if many of the antidepressants I’ve taken that I said didn’t help me actually might have worked, if I had stuck with them past the adjustment period. Lexapro was the only drug I took where I felt like the side effects endangered my life. The rest just made me feel really miserable, but might have theoretically made me feel a lot better within a few weeks.

So assuming I can find a way to get meds and get the regular testing, I have to give it an adequate trial for real. I can’t bail on meds just because they make me feel bad, unless they make me completely unable to function.

I take Tylenol when I have a headache. I take muscle relaxers for the spasms in my legs. I’m not really living a totally natural life that suggests I should take the no-drugs approach to treating my MS.

I know the other side would say I need to stop taking Tylenol and muscle relaxers, get stricter about my diet, regularly engage in intense exercise, and then my MS symptoms would be manageable without drugs.

This is the most irresistible fantasy that I always fall into, because that means I have only myself to blame for being sick.

Realistically I’m not going to start doing those perfect things for my health if I haven’t yet. And in the meantime, I have to do something. I think I’d rather cast my lot with the majority of experts for a while and see what happens.