[vladus2000]

I went through an annoyance with my vision. I ended up having two separate conditions (well a total of 5 things were wrong with my eyes, but two acive major ones and two that will eventually cause more surgery later but aren't a big deal yet and one that was minor), but because the first one seemed like it was causing the problems, it took me almost a year to find and get real treatment for my issues so I could be able to see properly again. It was really depressing as my vision just kept getting worse and eye doctors were not helping. Right before my surgery my eyes got to the point I couldn't legally drive (bear in mind that I was under 40 at this point) even with glasses.

I just kept trying different doctors until an intern assistant to one of them saw the actual issue and got me referred to an awesome specialist who confirmed the diagnosis (and found the other problems I had not known about yet) and got me to a surgeon who did surgery to fix it. As a result of this, I strongly distrust doctors and I think they can sense that when I see them.

For those more curious, I had Idiopathic Intracranial Hypertension as I am rather large. Due to being large and doctors being able to see that problem, they just assumed it was the issue and they never looked at anything else. They put me on NASTY drugs to fix the issue, but my eye sight just kept getting worse. I have no idea why it took an intern to see the problem, but in the end I had ABMD (also known as Map-Dot-Fingerprint Dystrophy). I believe a total of 6 eye doctors and two neurologists completely missed it. I really should have gotten the intern's name and properly thanked him, as who knows how much longer I would have had to go without a diagnosis. IIH can cause blindness, as it will slowly destroy your vision (or in some cases quickly), so I kinda understand why they may not have seen it, but from what I have read, it sounds like ABMD is pretty easy to see if you look for it, and none of the real doctors did.

So I hope no one out there ever has multiple problems causing similar symptoms, because doctors can't be bothered to think about that possibility, at least eye doctors.

[azinman2]

If it’s rare then most doctors probably ignored it for that very reason. The intern, not “knowing better,” likely thought about it as they recently learned about it.

Why distrust doctors when it was a doctor (in training) that discovered it, and it took other doctors to treat it?

Uncommon things are a blind spot for most medicine, just like they are in other fields as well. For example, in CS rarely do we ever expect a compiler or OS or libc bug, but they do happen.

[vladus2000]

If one or two doctors missed it, I would be ok, but basically everyone I saw ignored it. My neurologist thought something else might be causing it and sent me somewhere else to get it looked at. That was about half way through the process, so the doctors were being told that someone thought something else was going on and they still missed something rather easy to see.

I have had other issues where doctors thought I was lying to them, although no others that ended up with any serious consequences, just having to go see someone else.

I also had a doctor recommend dangerous surgery for a condition I ended up not having. Which, yes, getting a second opinion is good, but had I not done that, I would have had major surgery on my head that has a roughly 10% chance to deafen you for life.

I have the misfortune of having multiple rare issues (on more than just my eyes) and as a result, dealing with western medicine sucks.

My father has similar issues, so I have seen it with him too. For example, doctors let his appendix explode inside of him after he went into ER twice complaining of extreme pain in his abdomen. It exploded a few hours into the second visit and he almost died.

[luckman212]

Mind sharing what these misdiagnosed symptoms were that you had?