Optic Neuritis/Migraines - Should I just accept the doctors don't know?

Question

3 years ago I had my first bout of optic Neuritis and lost most of the vision in my left eye. After a 2nd bout about a year later my optic nerve is permenantly damaged and I'll never get 100% of my vision back.

In January this year I started getting horrible migraines, but after 2 MRI scans and a Lumbar Puncture they have ruled out MS and can't give me an explanation.

I'm not content to think this just 'happened' without an underlying cause.

Should I worry? Any ideas what could have caused the problem? What can I do now? Should they have tested for anything other than MS?

Answer 1

I would suggest doing your own research and trying to find doctors or centers which might have expertise in this area.  Often, patients go to numerous doctors who are unable to diagnose them, but often by researching their own symptoms and seeking out specialists they can get an accurate diagnosis.  Doctors say there is no underlying cause because they are not aware of what you have and not because they necessarily isn't one.  I would suggest going to a different hospital and seeing different doctors and making calls to various centers to see if you can find someone who will have more information and might be able to get you a more detailed diagnosis.

Answer 2

There is no definitive test for migraines: that diagnosis can only come with confidence on a good match of symptoms *and* the elimination of of all plausible/feasible alternates.

Yes, a lot of cases of optic neuritis never have an underlying cause  isolated.

But having one condition doesn't make one proof against having anything else, so a separate migraine problem is quite possible.  There doesn't have to be a connection, though with your history one would be suspected and extra checks done. " 2 MRI scans and a Lumbar Puncture " would certainly fall into that category.

The next step would probably be to take advice from a migraine expert.

There are multiple possible triggers for migraine: stress, food sensitivities, on the monthly cycle for females.  Tracking down any correlation there would increase the confidence of an "only" migraine diagnosis.

Other possibilities would probably have shown up in previous tests:

Lupus or sarcoidosis, for examples.

Best wishes, Optometrist, retired.