Currently in limbo. ON or ocular migraine?

[Marie19]

I have been having symptoms since January that include peripheral neuropathy, fatigue, dizziness and lack of reflexes below the knees. I was hospitalised then and diagnosed with Guillan Barre syndrome. The neuro I saw a month later was a bit dubious about this but adopted a "wait and see" attitude.

Shortly after the GBS diagnosis I noticed that my vision was slightly blurry in one eye and that I had problems with depth perception, i.e had the impression that the ground was further away than it really was. Two months later my vision became generally "disturbed" and I started seeing floaters and then black spots. After a couple of weeks of this I started having strong headaches and a stiff neck along with floaters in the other eye and numbness down one side. I occasionally see flashes in my peripheral vision. My eyes are slightly sore and bloodshot, one more than the other.

I was hospitalised again and the doctors told me I was suffering from migraines with aura. I have never had a migraine before and neither has anyone in my family. Triptans made no difference to the symptoms.

I am concerned that this may actually be misdiagnosed ON. My MRIs (done three months apart) show two brain lesions this could fit an MS diagnosis (Guillain Barre syndrome would not last so long and doesn't normally cause this kind of issue). I have made another appointment with my neuro but it won't be until the end of the month.

Does what I describe fit anyone's experience of ON?

Thanks!

Marie

[22cyclist]

Hi Marie: It sounds like you are having migraines. I say this because of your symptomatology. ON doesn't usually present with floaters, that is more of an ocular migraine thing. Also your symptoms are not lasting more than 24 hours consistently. Either pain, blindness, blurriness, lasts more than 24 hours and usually up to about 3-4 days before seeking steroid treatment from an ophthalmologist.

I would trust your neurologist for now. If anything else happens just let him/her know so they can keep a record. Especially if something lasts >24 hours. This will call for more evaluation.

Good luck and take care.

Lisa

[Marie19]

Hi Lisa,

Thanks for your answer However I obviously didn't explain myself very well: I have been having these symptoms continuously for over 6 weeks now!

I know this supposedly can happen with migraines, but it's extremely rare.

[22cyclist]

Marie: I would go see your ophthalmologist to try and sort this out. It still does not sound like ON, but there are simple ways for the ophthalmologist to tell.

Best of luck and let us know how it goes, OK?

Take care
Lisa

[Alicious]

Part of what you describe sounds like possible ON (blurriness, pain upon eye movement for a few days (not months), possibly some of the other disturbances like depth perception). Some of it sounds very not ON (bloodshot, headaches and neck stiffness, floaters). Some of the other stuff (flashes, black spots if the missing piece of vision is consistent) could be or could not be, depending on how they present.

I'm torn; I've had a neurologist tell me, knowing I have MS, that I wasn't having ON, only to have an ophthalmologist and neuro-ophthalmologist tell him he was wrong. I've also had an ophthalmologist another time tell me no ON, and it turns out that they were also wrong. While your doctors are probably correct, they can and do make errors.

I have no idea why ON is so tricky, or if I'm just "lucky," but no matter if you have ON and some other things going on, or no ON at all, *something* is happening. If you don't feel that ocular migraines are a good enough explanation, I would get a second opinion to see if you can get some clarity. Heck, see a neuro-ophthalmologist if you can find one (they aren't very common); they are the absolute experts on ON.

FWIW, my experiences involve a fairly sudden (over the course of a day) noticeable progression of blurriness which may get worse over successive days. Twice this has happened a couple of days after one pupil was significantly larger than the other for a day. With only one bout of ON have I had pain upon eye movement, even though I've had it many, many times. ON has a classic presentation, but there are variations, and how it presents can vary slightly (within given parameters) by person and incident.

I wish you luck as you figure all of this out. I have had ON myself three times in just the past six months, and wouldn't wish it on anyone. I'm hoping your issues are much more boring and easy to solve.

[Marie19]

Thank you both very much for your answers. I am going to try to get in and see an ophthalmologist as soon as possible.

I'm sorry about your ON issues Alicious. Hope you find some relief soon.

Best,

Marie