3 ms·

I have an autoimmune decease and factor 5. Very similar symptoms as long term covid. Lots of inflammation, brain fog, cognitive defects. I spent years being d

I have an autoimmune decease and factor 5. Very similar symptoms as long term covid. Lots of inflammation, brain fog, cognitive defects. I spent years being dismissed as depressed Or having anxiety. When I finally was diagnosed and started treating condition with medications I could handle my cognitive problems and depression lifted. Support groups for autoimmune conditions are full of people who routinely are dismissed by doctors.

ImaCake 5y ago
A few years ago I suffered from an autoimmune issue for about 3 months. It took most of that time just to convince a doctor to give me meloxicam, which is just strong panadol/aspirin really. Having a chronic fever for a few months really made it hard to do anything more substantial than play video games. I don't know how we teach general practitioners, but we are doing something horribly wrong. A lot of long covid people must be finding this out too, and it is just super sad.
- dmix 5y ago
  A big part is people are typically afraid, or don’t have the opportunity, to get a second opinion. One of my biggest lessons early in life was that not all doctors are the same (by a long shot). This is why it’s so important to see specialists related to your condition. And ultimately you’re going to be most responsible for getting proper care as often only you know what you’re experiencing. Medicine and pathology are far to wide of subjects for generalists to operate efficiently across every field and niche. Which is why specialization is so important and connecting the patients to the right specialists. There’s a lot of analogies to technology, where people tend to expect the experts to do and know everything and completely defer to them. I think we all have experienced this with our parents or people who didn’t grow up with computers. When ultimately the individual is always going to be a huge part of the puzzle and must accept that fact.
- dTal 5y ago
  >I don't know how we teach general practitioners We send them to a school which emphasizes cramming vast amounts of established knowledge into their heads, at the expense of critical thinking skills, social skills, and for that matter sleep. In a world where doctors use Google and WebMD the same as everyone else (because of course they do, no one retains an encyclopaedic knowledge of every medical condition), it's basically a hazing ritual.
  - throwaway316943 5y ago
    It’s really unfortunate the position they’re put in. It’sa hangover from the 1800s really when they were part of the professions and almost minor aristocracy. We need more competent technicians who are willing to work with their clients and admit that they don’t know the answer and then actually do the research.
MikeLumos 5y ago
Can you share a bit more about your autoimmune disease? What disease was it? What kind of medications have helped you? I'm suffering from some kind of autoimmune-like disease with similar symptoms and trying to figure out what's wrong with me.
- treeman79 5y ago
  Sjogrens. Second most common after lupus. Lots of neurological complications. Plaqunial helped a lot, but I can’t tolerate it. Shame, it works well. Steroids are good for ending a flare but it’s hard to get prescribed, also side effects. What really worked for me me was * blood thinners for cognitive defects * Avoid triggers, direct sun, sugar, caffeine, spice * autoimmune protocol diet * magnesium, vit d, e, b complex, fish oil Get blood work done for each kind. ANA test as a starting point. For me Early Sjo test confined diagnosis. Make a list of ALL symptoms and take it with you to all doctors. A Neuro-ophthalmologist was the first to say Sjogrens based only off my sheet. An elimination diet is probably the best place to start. I ate nothing but sweet potatoes for a month, my symptoms all cleared up. Stated coming back when I introduced random foods. That’s how I started following AIP diet

ImaCake 5y ago

A few years ago I suffered from an autoimmune issue for about 3 months. It took most of that time just to convince a doctor to give me meloxicam, which is just strong panadol/aspirin really. Having a chronic fever for a few months really made it hard to do anything more substantial than play video games. I don't know how we teach general practitioners, but we are doing something horribly wrong. A lot of long covid people must be finding this out too, and it is just super sad.

dmix 5y ago
A big part is people are typically afraid, or don’t have the opportunity, to get a second opinion. One of my biggest lessons early in life was that not all doctors are the same (by a long shot). This is why it’s so important to see specialists related to your condition. And ultimately you’re going to be most responsible for getting proper care as often only you know what you’re experiencing. Medicine and pathology are far to wide of subjects for generalists to operate efficiently across every field and niche. Which is why specialization is so important and connecting the patients to the right specialists. There’s a lot of analogies to technology, where people tend to expect the experts to do and know everything and completely defer to them. I think we all have experienced this with our parents or people who didn’t grow up with computers. When ultimately the individual is always going to be a huge part of the puzzle and must accept that fact.
dTal 5y ago
>I don't know how we teach general practitioners We send them to a school which emphasizes cramming vast amounts of established knowledge into their heads, at the expense of critical thinking skills, social skills, and for that matter sleep. In a world where doctors use Google and WebMD the same as everyone else (because of course they do, no one retains an encyclopaedic knowledge of every medical condition), it's basically a hazing ritual.
- throwaway316943 5y ago
  It’s really unfortunate the position they’re put in. It’sa hangover from the 1800s really when they were part of the professions and almost minor aristocracy. We need more competent technicians who are willing to work with their clients and admit that they don’t know the answer and then actually do the research.

MikeLumos 5y ago

Can you share a bit more about your autoimmune disease? What disease was it? What kind of medications have helped you? I'm suffering from some kind of autoimmune-like disease with similar symptoms and trying to figure out what's wrong with me.

treeman79 5y ago
Sjogrens. Second most common after lupus. Lots of neurological complications. Plaqunial helped a lot, but I can’t tolerate it. Shame, it works well. Steroids are good for ending a flare but it’s hard to get prescribed, also side effects. What really worked for me me was * blood thinners for cognitive defects * Avoid triggers, direct sun, sugar, caffeine, spice * autoimmune protocol diet * magnesium, vit d, e, b complex, fish oil Get blood work done for each kind. ANA test as a starting point. For me Early Sjo test confined diagnosis. Make a list of ALL symptoms and take it with you to all doctors. A Neuro-ophthalmologist was the first to say Sjogrens based only off my sheet. An elimination diet is probably the best place to start. I ate nothing but sweet potatoes for a month, my symptoms all cleared up. Stated coming back when I introduced random foods. That’s how I started following AIP diet