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meanwhile i’m still just sitting here with untreated MS while my insurance fights hard not to cover the medication that could drastically improve & increase the timeline of my quality of life. *blows a thousand raspberries* this is dumb.
so i’ve been in contact with biogen - the company that makes & supports tecfidera - like 20 zillion frickin’ times over the paste few weeks. my insurance also called today, and i got all excited bc i thought that maybe they were gonna tell me that my meds were ready to ship out. but instead they told me that they were declining the coverage of the medication, and tried to talk me into taking Copaxone instead. Which is like... really shitty of them? I understand that Copaxone is the oldest available RRMS medication, but they’re legally required to cover one type of every medication offered. Copaxone is what they cover for their injectable RRMS med, but as far as I can tell they don’t explicitly state that they cover any of the oral RRMS medications, soooo. That should mean that since there’s no generic for Tecfidera, they’re legally required to cover it. I called my dr and they’re going to appeal my insurance’s decision, so hopefully after the appeal they’ll be forced to cover it. cross ur fingers for me.
I called the rep from Tecfidera back - that’s who the call turned out to be from, not my insurance. They asked me a couple questions about how I’d heard about Tecfidera and why I’d chosen to use it to medicate my MS, and then after that they explained how the process was going to continue. I guess they’re going to know within 4-7 business days whether or not Tecfidera is going to be covered for me. I’m really worried that it’s not going to be covered, or that it’s only going to be covered partially and I’ll be left with a huge co-pay that I have to cover every few weeks. They have different programs that can help people with paying co-pays, but I’m still just really nervous about the whole situation. That and the fact that this is moving much faster than I thought, and I was banking on having at least another 4 to 6 weeks to wean bb off of nursing. I’m still not sure how I’m going to manage that.
for the past week or so i’ve been having flashes in my vision (like camera or lightening flashes) and back in May of 2015 that preceded my largest MS relapse to date, and the one that seemingly caused the most damage. I’m worried that I’m going to experience another bad relapse like that, and just the thought of that possibility is making my anxiety skyrocket. Not the best thing to be experiencing the first week of spring semester, but, what am i supposed to do about it, y’know.
lol my entire day has been spent violently cleaning, then getting tired & needing to sit down, & then getting dizzy and stumbling all over the place when i try to stand up ^^ but the house is clean & i even swiffered all the hard wood & i’m trying to remember to move slower!
i had my follow-up appt with my neurologist today! they went over my spinal MRI, and there were definite MS lesions present, none of which were active. So my diagnosis is official, and they had me sign paperwork to request coverage for MS medication from my insurance. I decided to go with Tecfidera and hopefully my insurance won’t give me too much trouble with it, since it is included in their covered medications list, it’s just not necessarily their #1 preferred MS medication (that’s Copaxone, just in case u were wondering). I asked my dr a bunch of questions & he reassured me multiple times that it’s not a misdiagnosis & that nothing else could be causing my individual set of symptoms. He did request that a repeat blood panel be done, mostly for my peace of mind & to confirm the previous results, and offered to set me up with an appointment for a spinal tap. But tbh I don’t want a giant freakin’ needle in my back, so I declined!
the dr said my prognosis is good considering they caught it at a relatively early point in the progression of the disease, but I do definitely have nerve damage and lagging reflexes in my lower legs, particularly the right. In fact after doing varying nerve & reflex tests, the attending physician & the neuro resident determined that my right side in general has sustained the brunt of the previous attack’s damage, as even my right arm & side are displaying less sensitivity and reactivity. Not a whole lot - the dr said it’s incredibly subtle, but still important to have in my chart for the sake of future comparisons to determine the disease progression. bb (my daughter) went with me to the appt and she was super polite and patient the entire time, even though we were out for like 5 hrs total. one of the nurses commented that “she looks like a baby princess!” and my daughter scoffed and said “I’m not a princess, I’m a superhero!” 😂
I’m still not thrilled abt the whole deal but I’m becoming more accepting, mostly bc i don’t really have a choice but also bc i’m pretty confident that i can perpetually kick my MS’s ass for the rest of my life. i’m gonna have to take a leaf out of bb’s book and just be my own superhero.
before getting diagnosed with MS i attributed my extreme fatigue to either depression or just plain laziness; an inability to function at the pace I was expected to. Now that I know I have MS and that this chronic overwhelming fatigue is one of my symptoms I think I’ve kind of subconsciously settled into it, like jumping onto a feather bed and slowly sinking out of view. This is not how I want to be reacting. I don’t want to lean into my symptoms, I don’t want to let them overtake me. But at this point I’m still kind of confused and reeling, so I’m unable to formulate a plan to deal with all this. I have a long history of depression and anxiety, and I’m really nervous that in the wake of all these big changes I’m going to become extremely depressed again.That’s not something I can afford in my life right now, not when my spring semester is about to start up and I have a two and a half year old who’s constantly go, go, going. It hasn’t been very long since my initial diagnosis, just a couple weeks, but I’m really worried that this sadness and overarching exhaustion is going to effect not only my schoolwork & my parenting, and obviously that’s not something I’m willing to let happen. How did you react to your diagnosis for your lifelong illness?
