MS Reclamation

I Ghosted My Neurologist 💔

I don’t think he was a bad dude. It seemed as if in other circumstances he’d be fun and charismatic. He was engaging and interesting when speaking, self-assured in interactions, super confident. He was funny. He generally reviews very well for specialization in neurology, all signs point to him being a fantastic physician. Overall I really liked him. He just wasn’t for me. Whether it was the MS specifically that he was ill-equipped to handle or what, I couldn’t say.

Avoiding doctors, medical professionals, anything to do with white lab coats has kind of been my forte. When I was diagnosed, “they got me” was my first thought. I’d only ever take medication as needed, following directions to the letter, but I would refuse anything long-term. Medicine scares me. Doctors have been intimidating. It’s not in the phobic sense, just a profound discomfort with the unknown if something weren’t medically necessary.

I knew disease-modifying drugs would be medically necessary. (If you’re new here: “Goals of the MS medicines are a birth control pill against a future event”, credit Dr. Aaron Boster, “Potholes in Brain and Spinal Cord, a literal description about Multiple Sclerosis“.)

Strike 1: “It’s probably not Multiple Sclerosis, since you haven’t had symptoms before.”

During our first appointment, he had my medical history right there in a manila folder. I tried telling him no, I’d been having symptoms by that point for at least six years, my records from my GP years prior said “probable MS”. I needed an MRI, at the time I couldn’t afford one and didn’t have the insurance. I’d had symptoms over the years since, but generally under the same insurance-circumstances, or within a range of severity I could ignore.

It seemed like he didn’t hear me. I accepted this as what probably happened at the time, though since I feel otherwise. More like he’d made decisions on the course of how this would play out and nothing I said mattered.

Strike 2 (Maybe 3): The actual diagnosis.

Looking around me, not making eye contact, he never actually said the words Multiple Sclerosis. He had no reason to think the diagnosis had been confirmed in any way prior. Instead of telling me I had Relapsing-Remitting Multiple Sclerosis, he simply said “if you’re going to have this you have the best possible kind”.

The best possible kind of what now? Granted I had seen the test results on my app, but he didn’t know that. I just kind of expected a doctor to be able to definitively identify and relay to me what it was that they were literally diagnosing me with.

Strike 3 (Maybe 4): Dismissing my concerns, then dismissing them again.

When I had received my MRIs and my GP referred me to neurology, I looked at medications so I had some idea of what to expect. I went into the neurologist’s office thinking precisely two things. I don’t want to inject myself if I can help it, and Tecfidera sounds terrible for someone without a gallbladder and related inability to eat, well, most fats.

When I told him (reiterating, because I suspected he wasn’t going to find it in my chart) I had concerns only about Tecfidera and didn’t want to mess with it, he said “well, let’s just try it and see how it goes”. Then, months later returning, completely unable to tolerate it, telling him so much, he told me he’d never heard of that side effect, it’s probably something else, because “none of my other patients have had any problem with this medication”. It was here he effectively shut me down, refusing to let me get a word in or assert my case. After he told me to just keep trying, and to schedule a follow up for six months on my way out. (I didn’t.)

My bestie who’d accompanied me to this appointment was absolutely livid at the way he ignored me. He also felt like no matter what I said, the neurologist wouldn’t have listened to me.

Strike 2b/5: The medically unnecessary lumbar puncture.

After informing me I didn’t have anything to worry about during our first appointment, he told me I needed a lumbar puncture to rule MS out. I had an awful time with the LP, short version being when I told the doctors performing the LP I needed more anesthesia than normal, numbing agents aren’t great for me (maybe related, mother is a natural red-head, I’m naturally in the range of strawberry), they didn’t give me enough. I felt the whole thing, it took an absurdly long time, the doc had to re-puncture me, couldn’t get fluid, all that. Anyways that set me up for the worst month of my life (maybe relapse, I was in bed for almost a month). Obviously,it didn’t pan out how my neurologist had expected.

When I visited my MS Specialist for the first time, he saw my charts. He was looking at my MRIs and said I hadn’t needed the LP at all. The specialist had set aside an hour to spend with me, listened when I told him what was happening with the Tecfidera, and switched me to Gilenya. He drew pictures to explain to me the mechanism of action and was just stellar in contrast.

Sometimes you just aren’t going to mesh well with the people you interact with, and it exceptionally sucks if it’s your doctor. It’s okay not to like them, it’s okay to get a second or a third opinion. It’s okay to switch doctors until you find one you’re comfortable with that communicates well with you, particularly to the degree you need.

I believe nearly all doctors wanted to work in the field to help people, and that most care about their patients, but sometimes things don’t line up or they’re too overwhelmed. That’s fine, doctors are people, but you need to put yourself first. Especially if the debate stems from anything like you don’t want to hurt their feelings or you’ve become too intimidated by them to candidly speak with them.

At this point, my only regret is that I didn’t communicate to my original neurologist what it was that made me not want to return to him. I’m soft-spoken and passive, and I’m not sure if being more assertive would’ve been of use in this case. I don’t really have any residual negative feels on the matter, and I am incredibly grateful to have my current team. This was the correct action for me. The one point that might be truly universal here is you need to take care of yourself, if a doctor isn’t helpful it’s more likely that they’d rather you find help that elsewhere.

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