Has anyone ever suggested theories for their diagnosis?

[kiwiiem]

Obviously, I’m sure people have suggested theories, this is more a question of how you went about going further with your theory and who you asked.

I developed a chronic condition that has gone undiagnosed for almost 3 years and hasn’t so far shown up on any scans, blood tests, biopsies or anything done to me during hospital stays.

Today I’ve just found out about a condition I’ve never heard of (and I don’t believe I’ve been tested for) that sounds eerily similar to the symptoms I display and I want to get in touch with someone about it but I’m not sure who / what to try first?

Part of me is thinking it won’t hurt to phone the doctors and ask if they’ve heard of it and if they can do some specific blood tests but then I know how limited the doctors can be because obviously they’re not specialists. So I would assume they’d be able to write to my consultant about it?

Sorry this is very long winded, I thought this part of MN would be my best bet since regardless of condition or pain, we usually go through a lot of the same processes and I don’t really have anyone in my everyday life that suffers with chronic pain / illness or things that are hard to diagnose.

I’m just asking what people have done in similar situations because something is telling me that I won’t get very far phoning my consultant’s secretary directly. Even if you’ve had a bad experience with suggesting diagnoses please let me know. X

[MyOtherCarIsAPorsche]

I think doctors are used to patients Googling by now.

I once took my son to the GP and when asked what the problem was I told the doctor that he had tonsillitis.

I was told off! (For telling him so.)

But he did indeed have tonsillitis - he'd had it before and it has a certain 'aroma'.

[GreenLeavesRustling]

Yes
i get myself well informed before any appointments and then make sure I have asked the right questions and told them what I have noticed symptoms wise.
I have a chronic condition and this is served me really well over the years
for eg
Saying - I know these symptoms can be associated with (disorder), do you think it might be that? Are there ways we could rule that out etc
good luck