Tag: chronic illness

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.

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MS Reclamation, Research

FDA and Pharmaceutical Reporting Vibes, Resources

I’ve previously posted about what I’ve seen as symptom/side-effect shaming or whatever you would call that, within the MS Facebook community. What I didn’t get into is the absurd amount of data I’ve found, that is generally unknown by both the public and healthcare providers, whether that be through simply being unaware of resources, or deliberately for the sake of not losing sight of more prominent concerns.

A lot of the data I’ve been looking at has been resources for adverse reactions, physician regard for patient concerns, and disclosure practices of pharmaceutical companies. Or rather, a lack of, and the reasons behind this. The research I’ve been going through is more patient-focused, I hope to use it to provide a solution that benefits those that can be helped by it. I don’t want to go into details for this project yet, for several reasons, but I don’t want to sit on the things I’m seeing in case their relevancy isn’t apparent or, people just don’t happen across them.

Following is a small list of medical studies and articles, including brief summaries.

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MS Reclamation

Social Media Medical Gatekeeping Rant

Remember when you first had symptoms of your disease? When you visited three or four, a dozen doctors and specialists, had referrals from referrals, had a gallon worth of blood draws? Maybe your doctor referred you for therapy, prescribed an antidepressant because it was “just anxiety”, or “just depression”?

Recall how dismissive your friends and family could be, perhaps still are. Do you remember that moment when you found the right doctor, that one person who believed you? When you received your diagnosis, and felt validated, or even relieved, that you finally had an answer?

You may understand that your experience is not the only experience of all of those diagnosed with the same disease/disorder you share. Your immune system decided you don’t get to walk this week, but there’s a wonderful woman in your support group who’s blind in one eye and struggling to find the right words, it’s all awful and you can see and understand what’s right there in front of you.

Considering this, why do you feel like the pharmaceutical companies, your doctor, and your personal experiences have given you all of the answers? That you completely comprehend the full extent of this condition and possible side effects to related medications? […]

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