Me and My MS


It’s actually rather difficult to rant on such a lovely, sunny Sunday, but I was trying to figure out a topic and this is what came to me.
I’m a glass is half full kind of gal and so I have to start with the good stuff first. The company I work for and the medical insurance company I deal with have been great, since my diagnosis of multiple sclerosis in 1994.
I had five pretty bad relapses in 1998 that allowed me to change the course of my disease. Before I went to see my neurologist that year, I did my research, with the assumption that we had to do something about the course of my disease. At that time, there were three drugs on the market, all injections, which could potentially help me. Betaseron, which was first on the market, Copaxone and Rebif. Avonex was not on the market yet.
So, I called my insurance company to see which they would cover. They told me that they would cover Betaseron and Copaxone, saying that Rebif was homeopathic (I know, crazy, right?). So, armed with that information, I went to my neuro, who said, “pick one.” Imagine that. I think that if it didn’t work, it wasn’t his fault, but there you have it.
I did a little more research and discovered the Copaxone had fewer side effects, so late in October of 1998, I began the daily needles. Fast forward to now—almost 17 years later, when I tried to get a refill and I’m told that the insurance company wouldn’t cover it. It turns out that as of last August they have a new policy. All expensive drugs (and this one is $1450 a month!) have to have the doctor fill in this paperwork, which, of course, took them a week to fax to me.
Now, it seems to me that a new policy like that should have been communicated to their customers right away, rather than when you are nearly out of it.
So, I called my doctor, whose receptionist says that he only fills in forms on Tuesday or Thursday at noon. The problem is that although my own doctor has been prescribing it for years now, I don’t know if he will sign it, or defer to the neuro. They would not allow me to fax it to them to see IF he would sign it first, so the first appointment is 3 weeks from now. I have four needles left.
I might have gone directly to my neuro, but the last time I tried to get an appointment between regular appointments, I was told, “He’s too busy to see you and can’t do anything for you anyway.” So, I wait. And I wait to see the effect on my MS, after nearly 17 years on it. Truthfully, the first four years I was on it, I didn’t have a relapse at all, but since then, I have had a very slow decline. Has it kept me from having any relapses, who knows?
Three years ago, my neuro documented that I was getting a bit worse each year. I can’t remember if his documentation actually said ‘secondary progressive’ or not, but if I am, I no longer qualify for Copaxone anyway. Hm, it might be that the retirement that I was hoping for next year might start with short term and then long term disability.
Am I up for a new adventure? I guess I have no choice. Let’s see where this takes me! My glass is always half full, remember? So, I wade into the unknown with a smile on my face.
God bless everyone, with their own adventures!


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