I would recommend you get a second, even third opinion, from a retina specialist and a neuro-ophthalmologist. Optic nerve drusen rarely causes severe vision loss, in the hundreds of patients I've taken care of only one of my patients has moderately severe vision loss due to OND. On the other hand MS is a common cause of loss of vision.
So the consults would help sort out how much is OND and how much MS caused optic nerve damage. Also to see if anything can be done to try and stabilize.
Thank you for your feedback, i appreciate your support.
When I suffered the problems in my right eye last year I saw many Opthalmologist and Nuero-Opthalmologist's but was given no confirmed diagnosis of ODD / OND or MS. Consider that MS was a possible diagnosis after my eye haemorrhage due to 2 non specific lesions being found from a brain MRI. But no bands from lumbar punctures.
So caught in limbo land with either no diagnosis and/or prognosis and treatment
Sometimes when you're dealing with "does this person have MS or not" it is uncertainty and often the Dx can only be made after years of observation.
There is no treatment of optic nerve drusen. If they are not sure you have MS then no treatment for that.
Just stay close to the neurologist and neuroophthalmologist you have the most confidence in and report any new problem or changes
It's been a while since my last update and I have since met with specialist neuro-ophthalmologist in London and had the diagnosis of ODD which has caused 3 AION events in both eyes.
My current vision status is loss of peripheral vision in both eyes, a central scotoma in my right eye which presents as a grey cloud across central vision and most recently small scotomas in my left eye causing small blurry spots just off central vision.
I'm now registered as partially sighted and possibly have to stop driving. I have constant pain in both eyes and photophobia in sun light
Can't find any research or studies of similar cases.
Prescribed aspirin as a possible long term preventative measures to thin blood to try and prevent future neuropathies
Any help welcome or contacts for research in the US
Your question is about optic disk drusen (ODD) but you should be far more concerned about the possibility of MS and its effects on the eye, your history of hemorrhage and the description of your retina as swollen and bumpy. ODD are very common and in a long career I only have two patients that have significant visual loss from ODD, they are not blind and typically ODD causes problem with peripheral vision rather than central. So you need a heart to heart with your retina and a better explanation of what's going on and the prognosis.
Having had many tests for MS (6x MRI of head, orbits and spine) only small non specific white lesions have been found in my brain that have not changed in 2 years and 3x Lumbar punctures have all been clear bands.
Had genetic testing for LHON and other genetic possibilities all which came back clear, so we have (myself and neurologist) put MS to the back of our minds, so your thoughts are interesting and may need revisiting