CMT Blog

CMT Blog

Living and Learning with Charcot Marie Tooth Disease.

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  • Diagnostic Pathways for Idiopathic Neuropathy

    “You have a serious illness of an undisclosed nature.”

    Dan

    June 7, 2023
    Research
    AIDP, alcohol, Amiodarone, B1, B12, B6, biopsy, Cancer, Celiac, Check POint Inhibitors, chemotherapy, CIDP, diabetes, Electrodiagnostics, GBS, Hepatitis C, HIV, hypothyroidism, Idiopathic Neuropathy, INH, kidney, Lead, Lyme Disease, MAG, mercury, MMN, muscle, nerve, Nerve Conduction Velocity, Norman Latov, POEMS, Sarcoid, Sjogren, small fiber
  • CIDP and CMT

    I’ve been interested in the diseases and disorders that can be mis-diagnosed as CMT (or vice versa) for a while. One that has come up a lot is Chronic Inflammatory Demyelinating Polyradiculoneuropathy (CIDP). CIDP can look like CMT cases where demyelination is prominent, usually Type 1/1A. In one international study of more than 1,100 people…

    Dan

    June 7, 2023
    Research
    CIDP, CMAP, CMT1A, F Wave, Nerve Conduction Velocity
  • 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…

    Dan

    May 10, 2023
    Uncategorized
  • 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 remnediable pains and struggles impacting our quality of daily life.

    Dan

    May 10, 2023
    Awareness, People, Research, Supports
    COVID-19, Depression, exercise, Loneliness, Pain, Patricia Inácio, Quality of Life, Surgeon General, Young Lee
  • Cal Newport has something sane to say about AI — and medicine, and much else

    David Epstein and Cal Newport discuss the possible impact of AI on medicine and medical diagnostics.

    Dan

    May 8, 2023
    News
    AI
  • BILLY’s in Canada now!

    Previously it was only possible to get BILLY shoes in Canada through retailers like Brainsport.ca and hsktkids.ca. Now BILLY is shipping from Canada to Canadian customers. Just go to billyfootwear.ca.

    Dan Knauss

    April 24, 2023
    News, Supports
    Billys
  • Differential Diagnosis with Dr. ChatGPT-4 in the House

    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 diagnostic path that was only vaguely hinted at by the human diagnosticians.

    Dan

    April 23, 2023
    Research
    ADCA-DN, AI, artificial intelligence, ChatGPT, CMT2, DI-CMT, DNMT1, HSAN, HSAN2, HSN, HSN1E, HSN2C, KIF1A, OpenAI
  • The “First Treatable CMT Disease” is Neither CMT Nor a Disease

    CMT-related research may truly do away with CMT disease first by eliminating or updating how naming and classification works in neurological pathology.

    Dan

    February 28, 2023
    News, Research
    Applied Therapeutics, AT-007, CMT2S, CMTA, CoQ10, COQ7, HNF, IGHMBP2, MD Canada, Neuromuscular Disorders, NMD4C, SMARD1, SORD
  • Anxious Dogs and People: Using AI to Make It Awkward

    Throwing curveballs at ChatGPT gets the most interesting results. You start to see the “artificial” part of AI that often reflects an uncomfortable problem or ugly contradiction in the ways humans think and use language — especially to classify others, which always indicates status and value.

    Dan

    February 24, 2023
    Art, Resistance
    Anxiety
  • Fuck Pain! And People Who Don’t Get It

    Some medical facts and advice about pain — and then some straight talk about the question pain makes more acute: why live at all?

    Dan

    February 13, 2023
    Supports, Therapy
    Anxiety, Depression, exercise, Imposter Syndrome, Nutrition, Pain, Sleep
  • If Pain Makes You Avoid Exercise, You’ll Gain More of It

    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…

    Dan

    February 1, 2023
    Supports
    exercise, Pain, Quality of Life, Young Lee
  • 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.

    Dan

    January 17, 2023
    Awareness, Research
    CNS, PSAT1, Serine, SORD
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