Hair is gray and the fires are burning

When you’re diagnosed with a major chronic illness like multiple sclerosis, everybody else thinks they know the answers.

The medical community puts way more faith in these drugs than is actually warranted. The best the drugs can do is reduce the number of relapses and some may slow the progression of the disease, but they are not cures. And many people seem to think they are.

My neurologist I saw in the hospital with my relapse last year signed me up to take Ocrevus. I have fairly high levels of the JC virus in my blood, which puts me at a much higher risk of developing a potentially fatal disease called PML, which has a 30 to 50 percent mortality rate. Drugs for MS can cause PML, which rules out a whole bunch of meds.

Ocrevus is brand new and has only been on the market for a year. They don’t know yet if it will cause PML. But the other drug they wanted me to take, Tysabri, does cause PML and fortunately my doctor didn’t want to risk it. But I don’t trust taking some drug whose effects are still pretty unknown since it hasn’t been on the market very long.

Also, it supposedly “works” by wiping out all of your body’s B-cells, which are part of the immune system. Remember AIDS? Nobody talks about it much anymore, but that disease essentially wiped out all of a person’s T-cells, which are also part of the immune system. Drugs like Ocrevus are supposed to temporarily wipe out MS by wiping out your immune system. No thank you.

My case of MS is so far not so bad that I’d rather risk death instead.

There are other MS drugs on the market, like Copaxone. My doctor told me that I should take Ocrevus instead because he didn’t think Copaxone would work. Nobody even understands how Copaxone is supposed to work and the best it can do is reduce relapses by about 30 percent.

So I said no to Ocrevus, but the drug’s manufacturer didn’t leave me alone for months. They kept calling to try to get me to schedule an appointment to receive my infusion of the drug. I kept saying no, then finally I stopped taking their calls altogether.

They stepped up their marketing and sent a letter addressed to my husband about why I should take it. I think that’s just incredibly sleazy and manipulative and underhanded. I get it: since the drug costs $65,000 a year, I’m a potential big cash cow for them. They don’t want to let that slip away. But luckily I think my husband is even more committed to the idea of me not taking the MS drugs than I am.

However, I have moments when I second-guess myself. I try to get time walking on the treadmill, which I don’t do as often as I’d like. But whenever I do get on there, I walk for five miles in about an hour. My husband told me yesterday that he can hear my foot drop getting heavier the longer I walk. Even from across the house, he can hear the heaviness of my foot. I didn’t know he could hear that and honestly the fact that he can makes me question whether I’m actually on the right path. It makes me a little scared, even though I’m successful in walking five miles.

At the very least, it lets me know that my MS is for sure real and progressing. I may never be a runner like I once wanted. My symptoms aren’t all in my head, which sometimes I try to convince myself that they are. I can hear myself slurring words when I’m exhausted or have pushed myself too hard. My legs twitch and hurt pretty much every day. Sometimes my legs shake so much it’s hard to sleep or sit still, and my feet go numb a lot. Probably the scariest symptom is that I sometimes have trouble swallowing and I feel like things are getting stuck in my throat.

Doctors and advocates for the idea that pharmaceuticals fix everything would consider my symptoms a strong sign that I need to be on their meds. But there’s no real proof that the meds will actually help and I think they’re far too risky for a “maybe.”

I am still choosing to believe that reducing stress (which I’m doing in particular by finally quitting freelancing), eating better, getting exercise, and taking naps are tangible efforts I can take to make me feel like I’m managing my illness.

Because as far as I know, the disease-modifying drugs wouldn’t take away any of these symptoms. I would just have side effects on top of these symptoms but maybe have fewer relapses like the one I had last year.

Still, the fact remains that standing up to the medical community is sometimes hard. They think they have the answers and they’ve convinced most of the public of the same. Saying “nah, I’ve read the studies and I’m not convinced” requires confidence that I don’t always have, especially when I’m afraid of what the future could bring.

I have indeed read the studies. I understand them. As a health writer for more than a decade, I know way more about this than the average person. My doctor wants me to just read the MS Society information sites, but they’re funded by all the drug companies. To me, that’s incredibly biased information. $40,000 to $65,000 a year for drugs that may kill me and only reduce the risk of relapse by 30 percent just doesn’t seem like a good deal to me.

The vast majority of people with MS continue to get sicker the more of the drugs they try, seemingly at a much faster pace than I am. I haven’t met anyone whose condition improved after taking any of the meds. The best case scenarios are ones where people didn’t get significantly worse for a number of years. That was me too, since I first had symptoms in 2001 but didn’t get bad enough to be diagnosed until 2013. I honestly think the drugs aren’t much more effective than placebo…a very expensive placebo.

But when they start coming after my husband to convince him of why I’m wrong and should take their drugs, suddenly that puts a lot more pressure on me to be right. And what if I’m not? How long will I stay well enough to be functional?

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