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.
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.
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.
If this isn't the truest thing. It's very difficult when you have doctors--who society tells you to deeply respect--calling you a lazy liar.
I don't think I would have been diagnosed if I didn't have a supportive family who insisted it wasn't "all in my head" and that I needed to keep searching for answers. It's very easy to start believing what the doctors say, no matter how loudly your body is screaming otherwise.
And then there's the opinions of general people... It's surprising how ignorant highly-educated engineers can be about medical issues. Again, I credit my family and friends for having kept my sanity all these years.
They don't just memorize information about one species, they need to know how to treat 5+. They do all their work without the patient giving verbal clues/feedback. And they often have limited resources/tests/treatments they can use to save a life.
They are some of the most creative, intelligent, and passionate minds in society. Although I may be a bit biased, based on my experiences. ;)
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.
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.
This is so painfully true. My lupus was repeatedly treated with prozac despite my insistence that I didn't feel at all depressed.
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.
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.