20 ms·

This rings true. I have something wrong with me. I’ve spent many years of my life trying to figure out what it is. But never fully have - it’s sick, but it see

• kevmo 5y ago
  Have you been tested for Lyme Disease? I know several folks with it, and they had very awful times (unnecessary surgery even) getting diagnosed.
  • senectus1 5y ago
    find another dr for better thoroughness, but no offense... dont take advice from random internet people pushing you to check for a specific disease without having seen a single symptom.
  • evanmoran 5y ago
    I can confirm that Lyme Disease is on the rise and has very strange symptoms: https://www.bayarealyme.org/about-lyme/lyme-disease-facts-statistics/ https://www.bayarealyme.org/about-lyme/lyme-disease-facts-st...
  • bigcorp-slave 5y ago
    Yes, and that’s not it. Unfortunately my constellation of symptoms does not seem to match any single entity. I have basically resigned myself to thinking that I may have an unusual genetic immunological or neurological defect. Think (this list is not exclusive or constant, and I go through multi-month cycles of subsets of these symptoms - all of them new onset since getting sick): - assorted chest and abdominal pain - thoracic spine pain - migraine - panic attacks, and strong palpable sensations of anxiety - sleep disturbances - blurry vision - one-sided facial numbness and pain - tachycardia - fatigue - nausea - difficulty concentrating - muscle fasciculations Some days I feel great, some days I’m virtually incapacitated. Hundreds of tests and years of specialists later we have found an assortment of minor things but nothing that really explains it. I’ve even entertained the idea that it’s all psychological but years of therapy have given me techniques to control the panic attacks, but not stop the physical sensations that kick them off.
    • s5300 5y ago
      CSF leak?
      • bigcorp-slave 5y ago
        That is a very interesting idea. The migraines do seem to be getting better with time, which would track that… but it’s been years!
    • erentz 5y ago
      Few thoughts come to mind in case you haven’t already come across them yourself: 1. Unlikely but testing for sleep apnea, just to rule out since I’ve heard people with strange constellations of symptoms find improvement this way. 2. Testing for neurological autoimmunity - a paraneoplastic panel, neuronal antibody panel, anti-nmda receptor. There are a number of panels depending on the lab for these with some overlaps between them just check what they cover. These can be hard to obtain you need a doctor who groks them. Also can be expensive and sometimes difficult to have insurance cover but that’s usually helped if the doctor groks it. 3. A small fiber punch biopsy. (See Therapath for info, may also find a talk on YouTube called Small Fibers Big Problems by Dr Oaklander) 4. Investigate ME/CFS (probably already have) and dysautomomia (autonomic neuropathy, possibly indicated if biopsy positive). 5. I’ve just put my email in my bio. If you’re US based and want a recommendation for some helpful neurologists who can look for this stuff send me an email.
      • bigcorp-slave 5y ago
        No sleep apnea, tried that one. No ME/CFS investigation done yet. Immunological seems very plausible. Dysautonomia seems like potentially a good fit. My feet are fine, so it can’t be SFSN, right? I’d love a recommendation for helpful neurologists. Will send email. Thank you!
    • cgio 5y ago
      Not a doctor, just being anecdotal. Any wheezing? I have most of these issues from hay fever/allergy, and just mentioning it because I was not even looking into it as as option. Especially if symptoms occurred after moving, changing environment (I had moved to a different country). Some of those could also be the outcome of others, feedback with others, medicine you take to address them etc., e.g. chest pain and panic attacks or puffers/adrenaline and palpable anxiety.
• leesalminen 5y ago
  Most doctors today seem to memorize and execute flowcharts and leave creative thinking in undergrad. Anything that deviates from the norm results in “fuck off lol”.
  • deleted 5y ago
    [deleted]
  • BeFlatXIII 5y ago
    I wonder how much of that is because of the “All A’s at all costs” mentality that is necessary to get admitted to merry school in the first place selects against creative problem solving. It’s like they took “if you hear hoofbeats, think horses instead of zebras (unless you’re in Uganda)” and then forgot that exception while on a metaphorical vacation to Uganda.
  • rscho 5y ago
    And believe it or not, that's actually very good for patients on average. That's how we came out of authoritarian medicine to get into evidence-based medicine.
• sterlind 5y ago
  hEDS, the disorder I have, is somewhat controversial like PANS is. the symptoms include hypermobility (overly flexible), spontaneous joint dislocations, widespread pain, joint degeneration, easily damaged skin, fatigue, immune dysfunction and tachycardia. ~2% of the population is hypermobile, but healthy, and don't have those symptoms. hEDS is known to be heritable, but the genes haven't yet been identified. many doctors conflate hEDS with healthy hypermobility, and don't take it seriously. I realized on my own that I met the criteria, but the first few doctors I saw wouldn't listen to me, even after my arm popped clean off my shoulder. now I have an excellent care team, but it took me a couple years of fighting to get a diagnosis.
  • marcan_42 5y ago
    I don't understand why so many doctors seem incapable of doing research or accept research provided to them by their patients. If you have symptoms that match a condition documented in medical literature, and the doctor can't come up with a better fitting explanation, why would they reject it? It's like these people learned a subset of their field and then just refuse to ever learn anything new.
    • LudwigNagasena 5y ago
      That’s because 99% of patients who do their own research come up with some crazy ideas.
      • AuryGlenz 5y ago
        I find that if you go in to an appointment with a peer reviewed study printed out things will go better for you. It’s a good way to signal “I did my own research, but not on YouTube.”
        • deltaonetwo 5y ago
          This is ingenious and a incredible way to display how illogical a doctor (and people in general) can be. It's completely obvious that the doctor isn't going to really read the paper (he's too busy). You just present a paper and suddenly the doctor will trust you more. Literally it's deference to Authority being employed by the doctor here; nothing going on with rationality or logic. Don't present a single logical argument to the doctor. If that argument, however logical, goes against traditional medical knowledge you will be dismissed. The key is to forget about logic and use an authoritative approach. I'm betting the actual contents of those research papers don't even matter. You can print out a completely bogus study, just make sure it looks legit.
• unanswered 5y ago
  You actually get tests? Consider yourself lucky. For me it's just "I don't recognize those symptoms. Symptom A and symptom B are never known to go together so I'll just ignore B, and there are no tests for conditions which cause A, so fuck off lol".
  • renewiltord 5y ago
    As usual this is the result of gatekeeping in the medical industry. It is typical of this industry to kill a million people through inaction to avoid killing one through action. As a bonus, by arrogating the exclusive right to drug prescription and analysis to themselves they can charge what they want. Man deserves true freedom. To self diagnose if one so desires, to kill oneself through incorrect prescriptions if one so desires. People foolishly say “If only the doctors would see my illness as an illness” not realizing they exist in a false prison. Doctors should not stop you from treating yourself. You are sovereign over your body. Never let them rule.
    • unanswered 5y ago
      That would be very helpful if I knew how to treat myself, or if some of the alternatives I might try were as safe as I should desire for experimentation. If anything, hare-brained attempts by loiscenced physicians at treatment with antibiotics, which left me with tinnitus, have made me very skeptical of any treatment until it's properly explained why I should agree. But I will leave that fight for when anyone can come up with a plausible option.
      • renewiltord 5y ago
        And that is a choice you can make for yourself. It is good that no one demands you treat yourself, only that you have the option.
    • jcelerier 5y ago
      That's all fine and dandy until the moment where you self-medicate, take your car, faint at the wheel and kill a family of four.
• checkyoursudo 5y ago
  It seems like there is a bit of an overestimation of what medicine can do. I don't know if that overestimation is by physicians, patients, society-at-large, everyone? It feels like we are barely out of the dark ages when it comes to medicine. My brother died at a fairly young age (30s) because nobody could figure out what was wrong with him over the course of a couple of years. Specialists investigated a lot of diagnoses. I don't know if it was rare or they just missed things or what. We'll never know if they could have done more or not. I heard many variations of "why can't these useless people figure this out?" And I have wondered if the answer is that, for all the advances and modern technology, we're just not that good at medicine yet, not really.
  • mewpmewp2 5y ago
    I think we are leagues out of dark ages, but it doesn't mean we are perfect or anywhere near perfect, or that it would even be possible to be perfect in the field of medicine. People like to think that some X has the perfect answer to any problem we might face, but in fact we don't have answers to very many problems. The ability to solve various problems is not binary.
    • Pyramus 5y ago
      Interestingly both statements are true. We are both in and leagues out of the dark ages. On average we have progressed tremendously over the last 200 years, say. That means for many diseases, we have made extraordinary progress, as evidenced by life expectancy. At the same time there are many diseases where we are simply touching the surface and have a very basic (maybe even incorrect) understanding. An example that comes to mind is we still don't know why we sleep. We have good guesses, and we are excellent at observing sleep and curing many related diseases. But why do we spend 1/3 of our lives asleep? We don't know. In other words, progress is not distributed uniformly over diseases. (On a different note, the dark ages weren't actually as dark [1].) [1] https://news.ycombinator.com/item?id=19740489 https://news.ycombinator.com/item?id=19740489
      • the-dude 5y ago
• ackbar03 5y ago
  I think this is sort of due to necessity. A country's health system, like all organizations, is resource constrained and must provide the maximum benefit it can to society with what it has, especially for public health systems
• Asooka 5y ago
  I've often remarked that if I (as an IT specialist) did my work the way most doctors do theirs - with the same arrogance and dismissal of my clients - I would be out of a job. I put more care and diligence in diagnosing the malfunction of a single machine, one that can just as easily be thrown in the trash and replaced at a cost of a few thousand dollars, than a GP does dismissing an irreplaceable person's bloodwork with "you're too young for cancer". Yes, sure, the scale is completely different, the subjects are completely different, but is this not why doctors are so highly paid and specialised? Whenever you have something that's even slightly exotic it's like you're dealing with the world's worst classifier and need to average the result of several of them to get a meaningful reading. Personally, I've been diagnosed with Gilbert's Syndrome. Which is basically "your liver doesn't fully process dead red blood cells, you're one of the people where it just be like that". It's not a severe condition - I just get a bit yellow sometimes, but a diagnosis of "it just be like that" is not really a diagnosis, is it? The real diagnosis would be "you have such and such gene that causes such and such enzyme to not be synthesised in the required amount leading to your liver not processing bilirubin". Obviously most people won't need or want a diagnosis that detailed, but why not let those who do want it pay for it? Let me pay you to take better care of my health...