MS Reclamation, Uncategorized

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

Some Favorite Resources

I realize for many Facebook and similar social media networks are the most accessible, and given the size of the groups, it’s certainly capable of being a fantastic resource with the amount of data available. As I’ve posted before though, I haven’t found a community I feel comfortable with there, and have found other communities and resources I prefer much more.  Whether it’s a result of better moderation, smaller more intimate communities, or even just sites with well-regarded physicians providing incredibly well-vetted data.

Below is a list of the resources I most often frequent, and give a brief explanation as to why I find it a noteworthy resource.

Shift.ms

Of all of the regular ol’ discussion forums, Shift.ms has in my experience had the most friendly, helpful and low-key community of over 37,000 users. Shift.ms is a registered UK charity and moderation seems to be top-notch.

The Mighty

This is new to me but pretty promising. The community seems friendly, though at the same time the social media vibes are giving me feels. I definitely appreciate the articles and the uplifting vibe.

Multiple Sclerosis Subreddit

While Reddit itself is fairly infamous for toxic behavior, they key is to find a like-aligned community. The MS subreddit, in particular, is well moderated, users generally helpful, and has a no-tough-love policy. The community welcomes patients, the undiagnosed, as well as caretakers (though there is another community specifically for caretakers). Excellent place to ask questions.

Multiple Sclerosis Discord Channel

This is a MS community Discord channel that also happens to be linked off of the subreddit. While I don’t believe they’re directly affiliated, the Discord community is lovely, helpful, and kind. There is a social calendar including an optional monthly VC. It’s a pretty busy server, but if you’re looking for something more in the text-based/messenger style of communication, it’s a great option.

Multiple Sclerosis Research Blog AKA Barts MS Blog

This blog is fairly nuanced. The posts are “divided into three levels. These allow you to know instantly whether a post is going to be plain English, or highly technical, and you can decide whether or not to read it, or whether you need to set aside more time to go through it” which makes the blog pretty accessible to all, and is a fantastic resource otherwise if you want to keep up to date on the state of MS, research, presently COVID, etc. The blog itself has an excellent page, “New to this blog?” that gives a brief rundown as to how the site functions and their purpose.

Dr. Aaron Boster MD’s Youtube Channel

Dr. Boster runs the Boster Center for Multiple Sclerosis in Columbus, Ohio. On his Youtube channel he hosts live Q&A sessions, and posts updates on new MS information, conference videos and more. A pretty charming fellow, quite relatable and charismatic.

Dr. Brandon Beaber’s Youtube Channel

Similar content to Dr. Boster, Dr. Beaber, the author of “Resilience in the Face of Multiple Sclerosis“, is quite the character. I adore his energy and presence, with a side of OMG those thumbnails. He manages to crack me up even when the subject matter is on the heavier side. A total pleasure.

Let’s have some fun.

UCSF Clinical Trials

I’m not sure if I’ve mentioned it before, but I’ve felt blessed over the last couple of years to be a patient with the UCSF MS Clinic. As a result, their research is near to my heart. The trials listed here are often available to those outside of the SF Bay Area as well. The trials extend well past MS into many other conditions. Maybe worth a look if you might be interested in contributing to their research.

 

 

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MS Reclamation, Research

Mindfulness and Everything (Part 1)

I’m not spiritual, I have no faith I practice. I believe in science, that we’re all made of star-stuff. Big bang, Darwin, etc, save for the whole Atheists/Secular Humanists claiming some intellectual superiority over those that believe differently. The claim that you know there is no God feels contradictory to me. Based on my perception of the aforementioned, Agnostic is a much better fit, in that I would assert there is no possible way of knowing. Evolution is still a theory. Gravity is a theory. I feel that belief is altogether another thing, which doesn’t correlate to knowing or unknowing in the context those without faith understand it.

A fun read if you might feel so inclined, Evidence of biological basis for religion in human evolution. Having discussions is important, certainly, maybe arguing if you feel so inclined, I’m just willing to accept people feel the way they do, and the likelihood of bringing someone around to the way I see things is uniquely challenging and broadly unrewarding for the effort. I know this isn’t the case for everyone, though that idea is more upsetting to me than simply disagreeing with someone. I’m not saying this with some sense of moral superiority, I have clinically diagnosed anxiety and have honed my aversion to conflict over the course of my adult life. Anymore I can’t even say it’s cowardice, but it is easier for me. I prefer to accept people, life, things, the way they are, and from there choose the battles I want to engage in.

Mindfulness is the idea of learning how to be fully present and engaged in the moment, aware of your thoughts and feelings without distraction or judgment.

Maybe crippling anxiety gives me an edge in the “distraction or judgment” camp, though I still have a lot of work to do in being present/engaged in the moment.

Not faith-based, mindfulness meditation stands out to me as a net good. Mindfulness research shows substantial benefits for depression, anxiety, and chronic pain, mindfulness in this specific instance being awareness meditation. For me the idea of the practice is two-fold. While my RRMS isn’t particularly challenging in this capacity, the anxiety and PTSD are. From treating fatigue and other symptoms of RRMS, and the difficulties it does present, my anxiety has been amplified. I find it more difficult to communicate appropriately, and I’m ruminating like crazy.

I’ve seen a really cute anecdote in a few different places, the gist of it:

Personally, I’ve started with (the aforementioned) “Mindfulness in Plain English” by Bhante Gunaratana, but hope later down the line to read the Abiding in Mindfulness series by Joseph Goldstein, and Satipatthana books by Bhikkhu Analayo.

This particular type of Mindfulness Meditation I’m looking at is the Vipassana style, “Mindfulness meditation from the Theravada tradition for the spiritual development of people of all faiths & none.” Theravada being the “most commonly accepted name of Buddhism’s oldest existing school”, Vipassana translates to “to see things as they really are”, or “without-seeing”, alternatively referred to as insight. I felt as if I should start “at the beginning”, and the promise of “Plain English” was a huge draw.

“Vipassana meditation is something of a mental balancing act. You are going to be cultivating two separate qualities of the mind – mindfulness and concentration. Ideally these two work together as a team. They pull in tandem, so to speak. Therefore it is important to cultivate them side-by-side and in a balanced manner. If one of the factors is strengthened at the expense of the other, the balance of the mind is lost and meditation impossible.”

A fantastic summary of the benefits of Mindfulness and the impact on chronic illness can be found here, How Mindfulness Can Ease the Symptoms of Chronic Illness. Importantly, this article cites actual evidence supporting the usefulness of meditation in pain management.

“Meditation has been shown to reduce chronic pain by 57 percent, with accomplished meditators achieving pain-reduction rates of more than 90 percent.”

“Mindfulness meditation is unique in that it is not directed toward getting us to be different from how we already are.”

Further:

“Brain imaging reveals that mindfulness practice leads to alterations in the brain’s structure, which means the concept of mindfulness “rewiring” the brain isn’t just metaphorical. There’s an actual neurological process at work.”

I’m still super fresh with all of this, so far I’ve sussed: Take it slow at first, don’t expect a life-changing experience overnight. This is a year’s worth of exercise practice, so you have to be patient with yourself and the process. Pushing it too hard too fast can have a detrimental impact. Once you’ve done all you can on your own, find your progress plateaued, seek an instructor who can guide you further through the process. I’m still somewhere around “what am I even doing?”, though doing my best to move along as indicated. I hope to update with my experiences and will provide further resources and thoughts as time permits.

More information on the philosophy of Vipassana can be found at the Vipassana Fellowship, as well as a list of modern texts. The site itself is a little old-school and I can’t speak to the quality of the courses at present, but the information seems useful and it includes some …interesting translated texts. Dhamma.org also offers courses/retreats, worldwide. I’ve yet to fully vet these resources, so approach with caution. I hope to research Western/North American retreats further and will update here/share my findings.

(Also fun for a brain jumble/noggin muddle, the Alan Watts Organization literally hosts a 24/7 livestream of the lectures of, well, Alan Watts. Not directly correlated but any chance I have to share Alan Watts I… will probably take.)

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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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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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MS Reclamation

Pulse Prednisone & Skincare

I’ve been trying to find anything about the dryness situation I have going on after a pulse of prednisone and a quick search on the internet shows thin skin, dryness, bruising are all side effects, but details or coping suggestions are absent in favor of the severe side-effects. This is fair, all else considered.

I don’t know if I’m the only one out there that feels as if prednisone is a whole-body desiccant (I get the range of “extreme thirst” side effects), but I’d like to share what’s been working for me in the event this might help anyone else. I know for me these “temporary side effects” have an impact on my skin texture and how makeup wears for at least a month after going through a pulse treatment.

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