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@cmtblogger
Kahtulas
During the pandemic and the following winter when there was a lot of ice on the ground, I did a lot more daily walking than I have in the winter months since then. That was thanks to the slow, still-incomplete healing of a leg I broke badly enough to be off it or not use it much for most of a year with other things slowing me down and getting in the way too, like CMT or whatever my mystery NMD…
Diagnostic Pathways for Idiopathic Neuropathy
“You have a serious illness of an undisclosed nature” says a doctor to a patient in a cartoon within Dr. Norman Latov, MD, PhD’s recent presentation on idiopathic neuropathy sponsored by the Foundation for Peripheral Neuropathy. There are many cases where people present neuropathic symptoms, but the causes are unclear. The current diagnostic pathways Dr. Latov maps out are familiar and…
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CIDP and CMT
I’ve been interested in the diseases and disorders that can be mis-diagnosed as CMT or vice versa. One that has come up a lot is Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP) which can look like CMT cases where demyelination is prominent, usually Type 1/1A. In one international study of more than 1,100 people diagnosed with CIDP, 3.2% actually had CMT. People with CIDP showed…
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There is no such thing as standing, there is only being held up.
Friends reminded me of this great passage from a letter of Franz Rosenzweig to his sister: You know, you needn’t feel bad because you lack the power to ‘tell yourself the whole truth’, for once, for your own good. Believe me, no-one has this power; no-one can help themselves. Though the world is full of people who try to make themselves believe that they can, they succeed no better than…
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Physical and Emotional Pain Need Equal Attention in CMT and Polyneuropathy Communities
Alongside research for treatments and cures, the CMT community needs to take a hard look at some elephants in the room — the most common and most remediable pains and struggles impacting the quality of our daily lives. Young Lee has another good article on the challenges of social isolation and loneliness for people with CMT — and so many others. With the US Surgeon General calling for attention…
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Cal Newport has something sane to say about AI — and medicine, and much else
Here’s a great conversation between the eminently sane and insightful David Epstein and Cal Newport about AI. Their takes on the way doctors and diagnostic medicine may be affected by practical AI is very good and more or less squares with my own. DE: Now for an optimistic question. You mention in the article that “ChatGPT won’t replace doctors, but it might make their jobs easier by…
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Differential Diagnosis with Dr. ChatGPT-4
In a matter of seconds, ChatGPT reviewed and confirmed the findings of three neurologists and a genetic counselor that took me six years to gather. It also suggested a new diagnosis that was only vaguely hinted at by the human diagnosticians.
Can AI help diagnose rare diseases like Charcot Marie Tooth and other polyneuropathies? What is ChatGPT? You probably know by now that ChatGPT is a Chatbot you can talk to like you might with another person. Behind it is a Large Learning Model (LLM), currently GPT-4. GPT-4 has absorbed a massive amount of pre-September 2021 material from the internet. It’s passed a load of standard tests for…
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The "First Treatable CMT Disease" is Not CMT or a Disease
This article at CMT News isn’t strictly correct in calling SORD Deficiency a type of CMT, which is a disease that causes disabilities. SORD Deficiency is, well, a deficiency that causes a type of CMT or a diseased outcome resembling types of CMT. It might be easier to say the hereditary SORD Deficiency causes a type of CMT. These ‘D’ words — “Deficiency” and “Disease” — are related but distinct…
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Anxious Dogs and People: Using AI to Make It Awkward
I’ve found that throwing curveballs and spitballs at ChatGPT gets some of the most interesting results — for writing ideas and who knows what. It’s a bit like hacking the AI. You start to see the seams and rough edges, the “artificial” part of AI that often reflects an uncomfortable problem or ugly contradiction in the ways we think and use language — especially to classify others, which always…
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Fuck Pain! And People Who Don't Get It
During the COVID-19 pandemic, many organizations started taking their events online, and many have continued to do this. I’ve never been to a meeting of the Calgary Neuropathy Association (CNA), although I’ve met some of the members at a walkathon we all attended in Edmonton to raise funding for neurological research at the University of Alberta. The CNA has started hosting talks online too, but…
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No Pain = Gain More Pain
You may as well use it if you’re going to lose it anyway A recent study of people with CMT who engaged in athletic activities at least once a week (mostly gym workouts) for at least six months showed their pain levels were noticeably lower than another group that didn’t exercise. Depression levels and overall Quality of Life scores on surveys were better for the folks who hit the gym. Not very…
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New Gene (PSAT1) Linked to Treatable CMT-like Outcomes
Two new and treatable cases of peripheral neuropathy reported in children raise more questions about the definition and diagnosis of CMT types.
Steve Bryson at CMT News has a nice breakdown of new findings in China that some variants (mutations) in the PSAT1 gene [NIH, GeneCards] can result the cluster of symptoms commonly associated with the CMT family of polyneuropathy/neuromuscular diseases. There are several unusual and interesting features of these two pediatric CMT cases where mobility was seriously impaired in the feet and legs —…
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Physical Assessments for CMT
These are the main assessments for CMT.
The Charcot Marie Tooth Neuropathy Score (CMTNS) (version 2) is “a validated measure of length-dependent axonal and demyelinating CMT disability and can be investigated as an endpoint for longitudinal studies and clinical trials of CMT.” It was designed for CMT1A and is best suited to moderate-severe cases, but it can and has been used to assess the level of impairment for all kinds of CMT.…
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CMT, Depression, and Anxiety
It's not surprising to learn from another (and more detailed) study than I've seen before that people with CMT are very often dealing with depression and/or anxiety, especially with more severe versions of the disease, and many go "untreated."
It’s not surprising to learn from another (and more detailed) study (summarized here) than I’ve seen before that people with CMT are very often dealing with depression and/or anxiety, especially with more severe versions of the disease, and many go “untreated.” “Untreated” in this case means “unmedicated,” and there is a lot more that can be done to prevent or mitigate mood disorders than take…
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What does it mean to consider yourself disabled?
What does it mean to consider yourself disabled?
“Is it better to provoke stigma with support, or resist classification?” This is the question Joanne Limburg (and everyone with a disability) asks when confronted with the question: Do you consider yourself to be a disabled person? Yes: ☐ No: ☐ Prefer not to say: ☐ In my experience, it’s more common to encounter the question as one of whether you “have a disability,” which is a little better.…
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The Healthy Creative Balance: Between Unreason and a Surfeit of Reason
“It seems that the key to creative cognition is opening up the floodgates and letting in as much information as possible.”
David Epstein thinks like me, and he likes thinking the way we both seem to do it. “We” being “generalists,” which is the subject of one of his books and his Substack blog, Range Widely. One of his recent posts is a huge validation of a lot of hunches I’ve had about creativity and mental illness over the years. Especially in these recent, hard years. Epstein refers to a study, Creativity and…
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Crip Time
What would a calendar look like that prioritized and protected caregiving? What about one that understood crip time, or different types of relationships and the soft but consistent focus they demand? That understood creativity, and children, or grief?
From a book review in Disability Studies Quarterly (DSQ) — the first academic journal of its kind — Sami Schalk discusses Alison Kafer‘s book, Feminist, Queer, Crip. Crip time is flex time not just expanded but exploded; it requires re-imagining our notions of what can and should happen in time, or recognizing how expectations of ‘how long things take’ are based on very particular minds and…
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