4 ms·

My experience was that almost all doctors will declare you depressed. I printed out 4 page list of all the weird symptoms I had, and what affected me. One cra

My experience was that almost all doctors will declare you depressed. I printed out 4 page list of all the weird symptoms I had, and what affected me. One crazy old neurologist-ophthalmologist read the list and declared I had Sjogrens. Something I had not considered. Through research and Support groups I found out my symptoms were normal, and mostly ignored by doctors.

AQuantized 6y ago
This has been my experience with some ongoing/recent neurological symptoms. Ahidrosis, brain fog, reduced sensation, the list goes on. No doctor has outright said it was wholly a mental issue, but they're basically only willing to prescribe antidepressants or benzos. Sadly for most obscure problems you have to seek out help yourself.
- erentz 6y ago
  WRT reduced sensation and sweating: you may want to find a neurologist who deals with dysautonomia, and maybe get autonomic function testing done. Also look into small fiber neuropathy. There are support groups for these on FB and the like that may have useful information or referrals to good doctors. A lot of doctors hear small fiber neuropathy and only think diabetes. But it’s frequently associated with dysautonomia, progressive and autoimmune/inflammatory in origin.
  - treeman79 6y ago
    I have reduced sweating. It sucks big time. Best I can tell its from Sjogrens Or neuropathy problems from Sjogrens. Also dysatonomia is often caused by IIH. Treating IIH, drastically improved symptoms. Literally draining off spinal fluid.
    - dualthro 6y ago
      Can salt intake/blood pressure affect IIH at all?
      - treeman79 6y ago
        Yes. Blood pressure pills help out. Salt is weird. Oddly salt can at times improve IIH. But it’s not something to mess around with. Basically too much water causes organs to swell. Most organs handle this well enough. Brain will swell, but has no room to do so. A big dose of salt will draw water out of organs, including brains. Very good medical case I read up on, but can’t find now. A lot of Sjogrens people recommend adding pink salt to water or other hydration packs. Pure water seems to worsen dehydration. I have found this to true. Be careful as this is a complicated thing, and can hurt yourself by having too much or too little.
paperwasp42 6y ago
A veterinarian was the one who diagnosed me with Addison's disease, after noticing that my neuromuscular symptoms were similar to German Shepherds with the condition. This was after seeing 5+ human specialists who either couldn't figure out what was wrong, or (more commonly) didn't believe anything was wrong. Addison's is deadly if left untreated. According to my endocrinologist, I was scarily close to death. Doctors are quick to discourage patients from "Googling their symptoms", but patients (and their veterinary friends, lol) need to advocate for themselves. If I hadn't taken the tip about Addison's seriously and demanded tests from my primary care, I could very well be dead.
- cstejerean 6y ago
  One of the things I discovered a few years ago is that I can order my own lab tests and pay out of pocket (in the US, not sure how this works in other countries with functional healthcare systems). This way instead of wasting 1 doctor visit on ordering a test I can go to my doctor directly with test results in hand and discuss any outliers, etc
  - paperwasp42 6y ago
    Yes, this is a brilliant development!
  - kgin 6y ago
    In New York state, it's illegal to get any kind of medical testing without a doctor's order. Very frustrating.
    - treeman79 6y ago
      This has been one of the things slowing me down. Some tests took over a year for me to get run. Some I still haven’t. Other more exotic tests were super easy to get.
    - zingermc 6y ago
      Wow, does this apply to Covid tests?
elliekelly 6y ago
> My experience was that almost all doctors will declare you depressed. This is so painfully true. My lupus was repeatedly treated with prozac despite my insistence that I didn't feel at all depressed.
- treeman79 6y ago
  Yep. Got PTSD from doctors.
notabee 6y ago
Seconding this experience. Western medicine is bad in general at treating chronic conditions that aren't immediately life threatening, but you would really think that general doctors would be more aware of autoimmune issues considering how common they are. For anyone going through this fresh hell currently, I'd estimate my hit rate at about one out of 6 or 7 for doctors who'll actually look in depth versus those who were apparently just good at memorizing things for tests and can't diagnose their way out of a wet paper bag. If you haven't gotten at least that many opinions and are still suffering, keep trying. Also, quacks are a problem too. Too many of those promising cure-alls.
- treeman79 6y ago
  Most doctors think Sjogrens means dry mouth and dry eyes. They advise eye drops and gum. I basically quiz doctors until I find one that knows the basics. I have a rheumatologist. But if I need forms filled out only a PCP will unusually do that. Unless they don’t, then your screwed royal.

AQuantized 6y ago

This has been my experience with some ongoing/recent neurological symptoms. Ahidrosis, brain fog, reduced sensation, the list goes on. No doctor has outright said it was wholly a mental issue, but they're basically only willing to prescribe antidepressants or benzos. Sadly for most obscure problems you have to seek out help yourself.

erentz 6y ago
WRT reduced sensation and sweating: you may want to find a neurologist who deals with dysautonomia, and maybe get autonomic function testing done. Also look into small fiber neuropathy. There are support groups for these on FB and the like that may have useful information or referrals to good doctors. A lot of doctors hear small fiber neuropathy and only think diabetes. But it’s frequently associated with dysautonomia, progressive and autoimmune/inflammatory in origin.
- treeman79 6y ago
  I have reduced sweating. It sucks big time. Best I can tell its from Sjogrens Or neuropathy problems from Sjogrens. Also dysatonomia is often caused by IIH. Treating IIH, drastically improved symptoms. Literally draining off spinal fluid.
  - dualthro 6y ago
    Can salt intake/blood pressure affect IIH at all?
    - treeman79 6y ago
      Yes. Blood pressure pills help out. Salt is weird. Oddly salt can at times improve IIH. But it’s not something to mess around with. Basically too much water causes organs to swell. Most organs handle this well enough. Brain will swell, but has no room to do so. A big dose of salt will draw water out of organs, including brains. Very good medical case I read up on, but can’t find now. A lot of Sjogrens people recommend adding pink salt to water or other hydration packs. Pure water seems to worsen dehydration. I have found this to true. Be careful as this is a complicated thing, and can hurt yourself by having too much or too little.

paperwasp42 6y ago

A veterinarian was the one who diagnosed me with Addison's disease, after noticing that my neuromuscular symptoms were similar to German Shepherds with the condition. This was after seeing 5+ human specialists who either couldn't figure out what was wrong, or (more commonly) didn't believe anything was wrong. Addison's is deadly if left untreated. According to my endocrinologist, I was scarily close to death. Doctors are quick to discourage patients from "Googling their symptoms", but patients (and their veterinary friends, lol) need to advocate for themselves. If I hadn't taken the tip about Addison's seriously and demanded tests from my primary care, I could very well be dead.

cstejerean 6y ago
One of the things I discovered a few years ago is that I can order my own lab tests and pay out of pocket (in the US, not sure how this works in other countries with functional healthcare systems). This way instead of wasting 1 doctor visit on ordering a test I can go to my doctor directly with test results in hand and discuss any outliers, etc
- paperwasp42 6y ago
  Yes, this is a brilliant development!
- kgin 6y ago
  In New York state, it's illegal to get any kind of medical testing without a doctor's order. Very frustrating.
  - treeman79 6y ago
    This has been one of the things slowing me down. Some tests took over a year for me to get run. Some I still haven’t. Other more exotic tests were super easy to get.
  - zingermc 6y ago
    Wow, does this apply to Covid tests?

elliekelly 6y ago

> My experience was that almost all doctors will declare you depressed. This is so painfully true. My lupus was repeatedly treated with prozac despite my insistence that I didn't feel at all depressed.

treeman79 6y ago
Yep. Got PTSD from doctors.

notabee 6y ago

Seconding this experience. Western medicine is bad in general at treating chronic conditions that aren't immediately life threatening, but you would really think that general doctors would be more aware of autoimmune issues considering how common they are. For anyone going through this fresh hell currently, I'd estimate my hit rate at about one out of 6 or 7 for doctors who'll actually look in depth versus those who were apparently just good at memorizing things for tests and can't diagnose their way out of a wet paper bag. If you haven't gotten at least that many opinions and are still suffering, keep trying. Also, quacks are a problem too. Too many of those promising cure-alls.

treeman79 6y ago
Most doctors think Sjogrens means dry mouth and dry eyes. They advise eye drops and gum. I basically quiz doctors until I find one that knows the basics. I have a rheumatologist. But if I need forms filled out only a PCP will unusually do that. Unless they don’t, then your screwed royal.