What to do when you think diagnosis is wrong

[poppy]

What do you think it might be, Poppy? stress, psychosomatic, meds? not convinced x

I believe it is a form of hallucination and is harmless. It is irritating that doctors (eg my GP who initially asked when I described it whether I had had my eyes checked) was happy to accept my opinion that it was not an eye problem and was nothing harmful in itself, but is not willing to accept my opinion at all when I have the exact opposite belief (ie doc says it's something minor or harmless, and I don't agree with that).

[littlemermaid]

'Optical coherence tomography (OCT) has revolutionized the clinical practice of ophthalmology. It is a noninvasive imaging technique that provides high-resolution, cross-sectional images of the retina, retinal nerve fiber layer and the optic nerve head.' http://www.medscape.com/viewarticle/782392 They would do OCT scan if there was a question about these central vision obscurations being the start of macular problems because it gives a 3d image and you can see fluids and layers if useful. LM has this and it's really quick and very interesting. We monitor optic nerve head, for example, to look for unusual swelling. She has transient visual obscurations too.

Like you, she also had MRI 2y ago which the Paediatrician said is statistically safer for looking inside the head. We also looked for unusual eyeball shape eg flattening from behind and widened optic nerves from swelling, and very experienced Neuro docs look at the ventricles.

She's also had ultrasound of the back of eye, which I liked because it was easy, although the image wasn't anything like as good as the OCT with all the fancy measurements and cross-sections, we could see the optic nerve heads for swelling and measure the optic nerve widths.

Today the consultant tried to ask me what I wanted to try

Poppy, that sounds like a kind eye doc who might support you dealing with this disorder, which is all we ask really after years of this, and 'registrar interested in dry eye' would frankly be my holy grail. If LM skips blepharitis cleaning, she suffers. It's not that it cures it, it's just not doing warm compress and cleaning makes the eyes worse.

Still be happier if you were checked for macular degeneration, as kind Scout says. LM's central TVOs are from intracranial hypertension, which is very underdiagnosed and more common than they think, so there may be other causes of these physical symptoms, alternative to hallucinations. Do you have other hallucinations? I know some conditions or meds bring that, especially in peripheral vision.

So glad you've got some kindness and positivity going on in the eye clinic, and they spent good quality time with you. Hope you can develop good relations and get the best out of these guys.

How are you feeling now?

[poppy]

'Optical coherence tomography (OCT) has revolutionized the clinical practice of ophthalmology. It is a noninvasive imaging technique that provides high-resolution, cross-sectional images of the retina, retinal nerve fiber layer and the optic nerve head.' http://www.medscape.com/viewarticle/782392 They would do OCT scan if there was a question about these central vision obscurations being the start of macular problems because it gives a 3d image and you can see fluids and layers if useful. LM has this and it's really quick and very interesting. We monitor optic nerve head, for example, to look for unusual swelling. She has transient visual obscurations too.

Thanks for your reply LM RE OCT. I have been doing some reading too. Finding it hard to also understand from my reading why an MRI was ordered over an OCT, as OCT seems to be also more readily available and not requiring such specialist knowledge. I find it hard to believe a major public hospital eye clinic in OZ doesn't have OCT when I have read that many optometrists in OZ in major cities offer it. So you would think this would be cheaper and quicker, plus there is MAJOR (publicly funded) MRI rationing at least where I live. MRI I had before attracted no medicare nor private health rebate due to this rationing, my ex-husband wasn't even given an MRI in the ER with an obvious stroke, they would only do a CT (they discharged him after he recovered the next morning, and made him wait several months for MRI, when they found UM a stroke!) I wonder if this doc is doing the MRI in order to simply humour me as he feels that the dumb patient is more impressed by an MRI than something they have never heard of.