The OP came to us with questions, do you think she should have been ignored?
Of course no-one here should be giving a definitive diagnosis, and you are right to highlight that, but I think its good to point people in directions they can discuss with their doctor?
Also, some people are here searching for answers they feel they are not getting from doctors. Or because they have conflicting information from them. If all doctors and medical science were perfect and they had full trust, they wouldn’t need to come here at all, right?
Of course, ultimately, people need to get their diagnosis from a qualified person, but sometimes its good to encourage people to get a another opinion. I had a total of 4 and I’m VERY GLAD I did, because together with my own research I learnt a lot and ultimately have a much greater understanding about what is going on in my body.
But I do think ‘medicine’ has a case to answer in ENT/Oto neuro right now. It definitely does not all ‘add up’. And I believe this is dangerous too!
I am the sort of person, and I’m sure i’m not alone here, that needs to understand what is going wrong with them. Being told something that doesn’t make sense DEFINITELY makes me want to discuss this with others to improve my understanding and perhaps seek other avenues. If people want to come here to improve their understanding that I believe is a good thing. What better group of people to discuss it with than fellow sufferers of the same or similar conditions that have walked at least part of the road before?
I was VERY unhappy with the justification for my diagnosis of MAV. When asked why I had developed it, I was told it might be a DNA mutation, which was just ridiculous (I’d suffered an ear injury only 5 months before to the ear with the problems! Coincidence? I think NOT!). It was only when I subsequently got other opinions that I started to notice the uncanny similarity between MAV and SEH and the penny started to drop. Some of it, quite frankly, started to seem a bit fishy, to say the least, which is when my trust level started to drop!
Another good example of this is being told its all down to ‘anxiety’. I think its good that some people come to us here and complain that they are not happy about this. I think its only right to offer them another opinion and suggest the seek another professional opinion.
But like I said, no-one is challenging the diagnosis of ‘MAV’, but its important to point out to people that the root cause has not yet been confirmed by science and migraine may not be the root cause, in fact recent evidence suggests it is indeed an inner ear issue which part of the medical community has been saying all along (and you have to ask why you are going to an OTO neurologist if its only about the brain!!)
There are a lot of people on here that are too intelligent and too well read to be fobbed off by some of the doctors who do not explain the condition to the satisfaction of the patient. People deserve to know there are a lot of grey areas and be aware there is much we don’t know and don’t know for sure yet.
Of course I have sympathy with the doctors too, who have to go with less than perfect microscope into the body (especially in the case of ENT with the inner ear locked behind a thick wall of bone, deep in the head) and have to conform to professional best practice which can limit their freedom of discussion. I’ve even noticed a doctor cagey to challenge the status quo even though you could tell which side of the fence they sat, probably because they didn’t want to overstep professionally (which on balance is how it should be, but we should also be aware of this as patients)
Anyway, with all respect, I think this is a very good place to discuss all angles, quackery aside, of the condition so we should have reasonable, respectful freedom of speech on the matter. If we disagree on things, that’s fine too.
But you are also correct, for sure, that a professional diagnosis is ultimately what people should seek and they should do so until they are satisfied.