Tag: research

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

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.

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MS Reclamation

Ocrelizumab and COVID-19

Guidance for PwMS from their neurologists seems to have been “carry on per usual” with COVID guidance, which for a lot of folks seems to mean to do them as they normally would, which I completely understand the want for, but please, stay aware and cautious out there.  I’m seeing so much misinformation about the Anti-CD20 monoclonal antibodies (mAbs). Predominantly: neurologists telling their patients there isn’t cause for exceptional caution with any DMT. With a couple of therapies though, this might not be precisely accurate.

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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.”

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