Tag: ms

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.

[…]

Read more No Comments
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? […]

Read more
MS Reclamation

My Supplements, for MS.

I apologize for any confusing language, wrecked grammar, emoji, or random segues in advance. This is likely incomplete and will be subject to edits later. Any updates or changes to my routine or experience, I’ll attempt to post here. I hope I clean this up later.

I need to take stock of what I’m taking, why, and hopefully cut back on this stupidly pricey adventure. I figured I’d share in case any of the referenced material could help others.

[…]

Read more
MS Reclamation

Multiple Sclerosis Within the Black Community

Per the Mayo Clinic, IN PRESENT DAY 2020, “Risk Factors” for MS include:

White people, particularly those of Northern European descent, are at highest risk of developing MS. People of Asian, African or Native American descent have the lowest risk.

THIS IS FALSE. I’ll be civil for the sake of providing useful information and spreading awareness, but this is horrifying.

In an article “Multiple Sclerosis More Common In Black Women Than White” on Medical News Today:

“Of these new cases, black patients had a 47% greater likelihood of MS compared to white patients. Results also showed that Hispanics had a 50% reduced risk compared to white patients, and Asians had a 80% lower chance than whites.”

[…]

Read more