Undecided: To med or not to med?
I had an appointment with my family doctor just before the weekend. She’s a rural physician, and she’s amazing. I totally trust her being in charge of my healthcare. I’m undecided about MS medication, though. I had a really long talk with her about it.
I really don’t want to take the medication.
The more I find out about this medication, the more I feel taking it will make my day to day life crappier. I’m happy to report that right now my day to day life is pretty good, except when Dr GloomnDoom from the clinic calls. This med isn’t recommended for folks with IBS or similar issues. If I take it, I can get an upset stomach, abdominal cramping, and maybe some explosive diarrhea.
Sounds fun.
But the nurse assured me that I can take OTC meds to medicate those symptoms. Aspirin for the flushing, GI meds if necessary, an antihistamine if the flushing is itchy…
Why don’t I just crawl into bed and stay there? I’ll basically be comatose if I have to take an antihistamine on the regular. Medications tend to hit me really hard, so I’m not really excited about this MS modifying medication. It’s not Tylenol.
And then I got another phone call from the MS clinic first thing this morning. Someone I haven’t spoken to before. Who is my family doctor? Where is her practice located? Did I have the phone number? Any chance I had the fax number? Dr. SoandSo wants to send his clinical assessment notes over.
Ummmm…
I’ve never spoken to or met Dr SoandSo. I’m going to assume they’re going to send the notes the other doctor has done up. But I’ve listed my family doc on all my medical paperwork. Her name on any form that ever asked who my family doctor is in the last 8 years. In my Netcare, her name is on a bunch of lab requisitions. Anytime anyone’s asked, I’ve listed her as my family doctor. Plus, somebody has already been sending her paperwork on me and my care so what’s going on?
I acknowledge I have an attitude problem, okay? I’m on a short fuse right now and my frustration threshold is really low. But would it kill this place to, I don’t know, look through my file a smidge before calling?
This is just one reason I remain undecided.
I’ve been dealing with this clinic for three months. So far, I have no sense this place’s left hand knows what the right hand is doing. No one seems to have any clue about me or who I’ve already spoken to when they phone. I know I’m just one of a gazillion patients, but is a little skim of my file really too much to expect?
I at least tried to have enough respect for my patients to know their names. If they were already in care and had a patient file, I read the file even though I would deal with them less than an hour. Maybe that’s just me but while that patient was one of a hundred, I didn’t want them to feel that way. It doesn’t feel very good to feel like you’re just a faceless patient number in a crowd. It feels like I’m just part of a giant assembly line of MS patients.
I talked to my husband after the phone call, because it bothered me. If I get a sense that a company I’m dealing with isn’t on the ball, and it doesn’t improve any time I deal with them, I don’t do business with them.
But I should just surrender healthcare decisions to these folks without question or serious thought?
Why, because it’s a medical setting? Because instead of a retail purchase, it’s my immune system and my brain and my spinal cord and my entire future?
Maybe I should be wary and not rush to any decisions.
As I told my family doctor, other than accessing the MS clinic physiotherapist because I really want that expert opinion, the clinic isn’t doing a thing to improve my quality of life at the moment. They only upset me and stress me out. I’m sure I’d feel more comfortable if I’d met any of them in person. Or if they seemed to be a little more organized and communicative amongst themselves.
I’m just not sure which way to go. The neurologist (not an MS expert) who saw my MRI and actually did a neuro exam and physical assessment in person, thinks my prognosis is excellent, even without meds. The neurologist who is an MS expert is very concerned about my MRI. They’re quite convinced that I’m hours from a wheelchair, blindness, and how am I not peeing my pants daily?
There’s apparently a list of symptoms they would expect me to have, based on my MRI. I don’t have those symptoms, though. I unreservedly admit I have very little medical education compared to a doctor, let alone a specialist, but I’m not really thrilled that my treatment recommendations are based on an MRI as opposed to my actual existence.
I’m just a lowly Paramedic, but I was always trained to treat the patient, not the machine they were hooked up to.
So is this medication recommendation just based on my MRI, and not the rest of my history? I don’t feel good about that, but this neurologist is an MS expert. Based on my MRI, this neurologist seems to think I’m pretty much screwed.
Yet the neurologist who’s actually seen me in person and done an actual assessment, thinks I’m fine now and will get even finer if I keep up the lifestyle changes I’ve made. But he’s not an MS expert.
See why I have no idea what to do here or who to rely on?
Maybe I’m not that undecided, I just don’t want to refuse the medical opinion of someone who’s incredibly educated. Who am I to argue?
But I’m really leaning towards, thanks but no thanks to your medication right now. If I go for another MRI next year and I have new lesions, or if I develop new symptoms, obviously I’d be looking pretty hard at medications.
Right now? I had an initial MS incident eleven years ago that resolved without treatment. I had another flare up (albeit a big one) in October of 2020.
2 MS incidents in 11 years?
I don’t know that I need to jump on a very expensive medications with crappy (no pun intended) side effects, and a 50% efficacy rate, that’s going to increase my risk of infections and illness when I live with an actively working paramedic.
When I brought up concerns about catching every cold and flu that goes around, possibly pneumonia, and the fact that I’d be prone to UTIs, I felt like it was dismissed as, well if that happens, none of it is that big of a deal.
No offense, I’ve had two UTIs in my life and both times, constantly feeling like I was peeing razor blades every two minutes was a pretty miserable experience. I also don’t think I want to spend the rest of my life constantly battling colds and flu for a medication that has a 50% efficacy.
So I can be broke forever and constantly sick, but hey I might not end up needing a cane full-time? Does that really matter if I never bother getting off the couch or out of bed to go do anything out in the world because I’m under the weather? Plus, I don’t know if anyone’s noticed but we’re still in a pandemic so do I really want to take a medication that increases my risk of infections and might decimate my white blood cell count?
I’m undecided.
I have the drug rep guy calling me at some point about financial assistance for this medication, and I’ll keep an open mind about what he has to say. I’ve heard good things about him from a friend who also goes to the MS clinic, very knowledgeable about the medication, so maybe he can give me some more information to address my concerns.
If they won’t pay for the medication, it won’t matter that I’m undecided.
If they will fund it, then I’ll have to decide. But after talking with my loved ones and my family doctor, I’m still leaning towards a pass on the meds until at least my next MRI.
The recurring thing I’m noticing here, as I process and ponder, is please leave me alone to do my thing. My thing is working right now and frankly, I’m over any and all emotional upheaval right now. I hate being undecided, and every new phone call from the clinic makes things worse.
There’s enough stuff going on in my head, there’s not enough room for every member of the MS clinic to be in there too.
