I went to see my old neurologist yesterday. I wasn’t super impressed with him before, but at least he would prescribe medications for symptom relief, which the new neurologist I saw last year would not. I liked that my old neuro never pushed any of the disease-modifying drugs on me before — in fact, he never even suggested them.
Yesterday was a whole different story, though. After reviewing the results of the tests done during my hospitalization last year, he’s now saying I should take meds.
I asked if he thought I was secondary progressive and he said “that’s hard to tell for sure, but you’re progressing quickly now so you need the meds to try to stop it if at all possible.”
He wants me to start with IVIg treatment because steroids never wipe out my relapses anymore. Honestly, I would love to get the IVIg. But I also have terrible insurance and money is so tight since I had to quit working. I’m sure that because I haven’t hit my deductible yet, the IVIg will be completely unattainable for me.
After that, he wants me to start on the Ocrevus, which I’ve mentioned I’m terrified of because it’s so new. Even if I were willing to take it, I’d have to get MRIs every four months because once Ocrevus is in your system, you can’t get it out for six months. Their practice standard is MRIs every four months to see if the deadly brain disease PML is beginning to develop.
I have to pay for MRIs 100 percent out of pocket because of my crappy insurance. I haven’t even been able to get one a year, let alone three.
I’m high positive for the JC virus which means I’m at higher risk of developing PML with many of the other drugs. He suggested maybe Tecfidera or Gilenya, even though those also carry a higher risk of PML. He agrees that Copaxone will not likely do anything to help me, but suggested Rebif. When I said I was concerned about that one because it’s linked with causing depression and I already have major depressive disorder, he shrugged and asked why I wasn’t taking an SSRI.
I said I had taken nearly every SSRI and had bad reactions to them, so he suggested taking a newer antidepressant. Which again, my crappy insurance won’t cover.
I’m frustrated because I’m back to square one again. I had already decided I wasn’t going to take the drugs. But my neurologist said I’m clearly worse than I was last time I saw him two years ago, which is true. The relapse I had last year was really bad. Two years ago, I was still able to work. He says I will keep getting worse if I don’t take them, but he can’t actually know that. People take meds and still get worse on them. Some people also take meds and credit the meds with not getting worse.
Due to the nature of the disease, no one — not even the doctors — can know if the meds are working. There’s no correlation to the appearance of your brain on MRI and your symptoms. My MRI has not changed at all in five years, yet my symptoms still get worse. I haven’t been on any disease-modifying drugs in that time. Is that why my symptoms got worse or would they have gotten worse anyway?
Most doctors measure the success of an MS drug by whether or not you have new lesions on MRI. Since I haven’t had any new ones since being diagnosed, what is the intended outcome of taking them? How would you define success of a treatment?
Who do I believe? Do I take a chance, even though the drugs are really scary to me?
If no antidepressants have helped me so far, why do I think the MS drugs would? There’s certainly an element of confirmation bias, in that you get an outcome similar to what you’re expecting.
But there’s also the undeniable fact that money and insurance are major factors, whether or not I want them to be. I would be much more likely to take the chance on the medication route if it wouldn’t be so cost-prohibitive. I know there are assistance programs for the disease-modifying drugs, for example, and I’ve heard that you can get assistance for an annual MRI from the MS Society. But will they cover three MRIs in a year?
There are still all the other costs with having MS that make pursuing treatment a financial hardship. At a hundred dollars for a specialist visit (aka the neurologist), that adds to the budget. I didn’t expect that my share of the cost for the JC virus blood test would also be $100 (since my blood work is usually free) and there was certainly no assistance for that.
Part of me thinks there must be something wrong with me that I don’t have the money for these extra $100 things here and there. But at the same time, MS is just plain an expensive disease to have.
And now I’m back at where I started, having gone through this several times before. After getting the hard sell from another neurologist, am I sure that I don’t want to try the drugs? I know for sure that I actually do want to take the IVIg treatment but probably won’t be able to.
But really, unless the neurologist himself is offering to pay for any of my treatment and associated testing and office visits, I may have to continue opting out but saying it’s intentional. I’m not going to bankrupt my family over treatments that I’m not even sure will work and might actually harm me.