Eye troubles?

[easygoin1]

Hello Everyone,

I have a question about what is going on with my eyes to see if others have been having similar troubles and if it is from our illness or maybe from medications. It has gotten better, somewhat, lately, but it is still there. When I'm standing I often experience shaky vision. I find it very hard to describe well as it seems to maybe be that or maybe instability as in balance, but it does seem like it is where I find my vision shaky. My Neurologist referred me to see a NeuroOpthamologist and the appointment came up last week and he looked at my vision and noticed some shakiness with my eyes in the exam. He is uncertain if it is related to the AMN or Meds. I was hoping to get some guidance from others here if they have experienced anything similar.

Thank you. Be well and have a great day!

[monkeybus]

I get it plenty.

Shakey vision, blurred sometimes. Wonder if people can see my eyes shaking away.

Worries me 'cos retinal myelopathy is one of the many, godforsaken avenues of our disease. Always goes away but it's worrying enough.

Though, maybe it's in my brain. My neurologist always checks my MRI to check if the vision bit of the brain is OK.

The spasticity is all over, not just in your legs. Trouble gripping stuff, swallowing, and that. Logical it could hit your eyes.

I am not that worried. I look after my eyes. Don't rub them, proper lighting, don't stare at my phone all day.

I wish you nothing but the best.

[easygoin1 in reply to monkeybus]

Hello Monkeybus,

Thank you for the reply! This leads me to believe that it is illness and not meds as I get the impression that you are pretty aware of any med related side effects. And I don't think you are taking Carbamezapine, are you? That is the med that the NeuroOpthamolagist thought was the possible cause if it wasn't illness caused.

Fortunately I don't have trouble gripping stuff, but do have spastic hands and fingers, especially when tired.

Thank you again for the help!

I wish you nothing but the best as well. Be well and have a great day!

[monmon]

Definitely. In 2014 I was diagnosed with SOM (superior oblique myokymia = eye shaking) in the right eye by a neuro ophthalmologist at Moorfields Eye Hospital, London. SOM is super rare and often due (like in the case of MS) to a cranial nerve missing myelin. When I asked the neuro ophthalmologist if it was due to AMN she replied there’s no research so we should assume NO. Really?! I’ve been assuming YES. Ever since I’ve been prescribed Tegretol (Carbamazepine) to treat the shaking and fingers crossed it’s working. I wasn’t taking Carbamazepine before SOM started so I exclude it as a cause. Best of luck 🍀

[COwithAMN Administrator AMN EASIER Volunteer]

Hi easygoin,

Sorry to hear about your shaky eyes. Your neuroopthamologist says that your eyes shake. I wonder exactly what he or she is observing - is it just tiny movements that are not really visible to the naked eye, or very obvious movements?

Then there are effects that you see as blurriness or wavy lines on your vision. I would have said that the two things - shaky eyes and blurred or wavy vision are not necessarily related.

I mention this because I experience wavy lines on my vision occasionally, and have done so for years. It appears as a small patch on my vision where there are lines that vibrate or shimmer. They last only a minute or two, then slowly disappear.

In fact, this kind of phenomena could be unrelated to AMN and due instead to a form of migraine. See aao.org/eye-health/ask-opht...

That's what I have assumed in my own case. Just a thought.

Meantime, hope everything else is well with you.