Abnormal VEP

[Sidesteps]

Hi all, I'm back. I posted previously in the winter but most of my symptoms resided so I started to think my illness was a weird virus and took a break from thinking I had MS symptoms.

My last neurologist couldn't find anything so he left me with a script for seizures to help me sleep better for my muscle twitching. I didn't take it and luckily kept my MS specialist appt. He also felt it wasn't appropriate for me.

My appt. with the MS research specialist resulted in more blood tests to rule out Lupus, Lyme and Sarcoid. He also noted the ON symptoms and ordered a VEP. In that meeting he let me know that since my MRI was clean if I had/have ON there is a good chance this will not happen again. He gave percentages. 30 to 50% I think I won't have another recurrence for 15 years.

My blood tests are all negative. I even went to my family doctor for thyroid because my vision issues appear to be getting worse. I have found double vision.

I had my VEP yesterday, the technician indicated my right eye is fine. My left eye not so much. I'm having the most severe double vision in that eye. It also is a bit muted. There is a significant area of my vision that letters on the computer screen look muted (grey instead of black.) I also have a small spot that is dark (like blacked out) in my visual field. My right eye though aches at times and is getting the headaches. My vision seems very "off balance."

I am still getting twitches, random body movements and a deep ache inside my arms/legs. I dont feel 100% but I feel a lot better than I did.

The doctor indicated if I had/have ON, I would go into monitor mode. MRI's once every six months or so... I'll be due for another one in about 2 months. My question is "where do I go from here?" and since I'm still having symptoms albeit subsided can they do ANYTHING for the chronic ON (going on 5 months now.)

Any advise or insight is welcome. I'm lost. I was thinking this was in my head but it appears it really is "in my head." ;)

PS. I'm posting on my phone so it sometimes makes weird corrections to certain words. Sorry for typos in advance.

[Wobbly]

anyone?

[Sidesteps]

They should be calling me with the full report and direction by Monday. Does anyone else have experience with ON? I know it's different for everyone but I'm curious as to different experiences.

[Wobbly]

I would get back to the Neuro and ask about these results.   I think you might need more tests done or a second opinion..

let us know how things go OK
take care
wobbly