Abnormal VEP doesn't prove optic nerve damage

[tasha822]

I may start to rant a bit so please bear with me. Today I went to the eye doctor who diagnosed ON in my left eye last year. I went back today for more vision problems such as blurry and double vision along with a lot of pressure behind my eyes. WELL this doc told me in the same 10 min conversation that he was the first one to diagnose my ON and then went on to say at the end of conversation that I have never had it!!! When I explained to him that my neuro did a VEP and it came back showing severe damage, he said "that test is good for nothing, It proves nothing" Am I crazy? I and my husband were so befuddled that I got up an walked out!! Could someone please explain this to me? Does a VEP show nerve damage or not? Does it prove ON or not?Sorry this is so long but, I'm feeling a little CRAZY right now!

[tasha822]

I'm sorry COBOB, when I'm feeling crazy, I have no patience. On the paper for the VEP I see P100 is 122.25 in left eye could you please explain that? And for impression is says left optic nerve dysfunction. I don't see where the wave is. Once again sorry for my impatience.

[jumpinjiminy]

Oh my. I've seen a presto change-o neuro. My VEP was normal, but I had abnormal color vision testing, acuity and an RAPD on exam. There was only evidence of migraines - even though using this as the dx meant I was having a 3-month migraine with daily visual disturbances along with L'Hermittes and bladder/bowel issues.

He basically put everything into the migraine dx basket except for the bowel and bladder issues. When I asked him if migraines could cause those he admitted he wasn't aware that they could. At this point, the conversation then went back to IVIG for a possible tx, and then onto how difficult it is to get it approved by the insurance companies.

I don't hold it against him anymore however. At the time, it was like he had tossed cold water in my face, after telling me the visit before he thought it could be MS because of the L'Hermittes. The next visit, he denied ever having said that and claimed he would have never told me that to begin with.

Anyway, these guys have hundreds of patients and if they don't take thorough notes after your visit, that info is lost forever and never existed to begin with.

I was supposed to go see him (he's a brilliant doc, btw) for a follow-up this week, but decided to put it off. I've found a local neuro that will be responsive if ever I have an acute need for it, and I'm done chasing a dx for now. If he wants me to have further testing and thinks it might lead us somewhere, I'll go. But I'm done pushing for answers. I may go back to see the presto change-o neuro sometime next year, but only if there is objective evidence of a change and no dx.

I'm sorry for your frustration. It seems to happen too often with these neurology problems. Hugs.

[meneither123]

jumpinjiminy. Here's what happened to me. I get icepick headaches in my right temple and I go blind in one eye. Neuro called it an Optic Migraine and it would go away. It didn't. Now I have a headache all of the time (probably stress because I want to knock him and my Opth out so very badly.) and my eyes feel like they want to blow out the front. No I won't forgive the old coots!  3 years of my life has been going from opto, to retinal, to optho, to neuro and now to neuro-optho??? All my original neuro said after failing VEP twice, and okay the third after Prednisone was "you don't have MS". I didn't know Optic Neuritis was a sign of MS. All I want is to fix my eyes, or tell me I"m crazy, and I"ll deal with it!

[drsdonthelp]

I can understand your frustration.. I am not dx'd with ms, but I have been through the VEP and it came back abnormal. When the doc; called me to share the results with me over the phone, he basically brushed it off and said that it was due to my eye disease, (graves opthalmopathy) however, the report stated that it was consistent with demyelinating process.  
He then proceeded to say that my "problem" could be central sensitization?? !! LOL  Guess what?? , He is no longer a doc. that I go to.

Shop around for a good neuro. that could better help you, you deserve to get the right answers and not be blown off.

Good luck to you,
Pam

[meneither123]

drsdonthelp, do you have Graves or MS??? I want to blow up at both my Optho and my neuro but actually need to find the truth first.

[Princepaso]

I would trust your gut.  There are doctors to ask questions in this forum.
So I can only speak from my experience, there are reasons for vision issues and veps are a standard for ms diagnoisis. I fired my neuro opthal doc, who did not pay attention, much less do a thorough exam,, by the way, optic neuritis is not well visualize via a fundus retinal exam.
I hope your are working with a ms doc you can communicate all your issues.
Stay hopefully,
Kirsten/ Prince

[meneither123]

WHAT??? Princepasso????? So, I flunked the VEP twice. Went on steroids and it cleared on third????? Neuro said I didn't have MS, Optho freaked out and said I was legally blind peripherally (whatever, I"m angry), now I"m headed for an Neuro-Optho in December 2 years after my vision went to hell in a hand basket, "i think". I am way tired of no answers, pretty sure I'm crazy now and if this Dr. doesn't pay attention, lawsuits are on their way.  
Yes I'm ranting and I know it

[COBOB]

A VEP with an increased P100 time (over 115 mS for < 60)  and a normal waveform is considered positive for demyelination (ON).  There are other abnormalities that are not indicative of ON.  

Sorry for the delay, you have to wait for some of us to get done with work (just joking.)

Bob

[lilmiss1999]

I am sorry you are going through this.

Unfortunately I dont have any advise. I was watching this post as I am to have my VEP soon and have the same questions as you.

Hope some one answers your questions best they can.

Jen