Neuro-Ophthamologist doesn't believe in VEP?!?!?

Hello Everyone,
First of all, I am undiagnosed and have been ruled out for all mimics.  My vision is completely out of whack.  MS specialist thought I had 6th nerve palsy but neuro-ophth actually confirmed 4th nerve palsy instead.  MS specialist sent me for EP testing and my VEP came back severely abnormal in both eyes.  MS specialist said the only cause could be optic neuritis but was puzzled because I didn't have typical symptoms and sent me to have blood work done to rule out NMO.  No NMO, thank God!  On follow-up with the neuro-ophth I showed her my VEP results which she had already reviewed.  She said, "I don't believe in VEP's.  The only reason we do them is to make sure the patient isn't lying.  Your optic nerve looks perfectly normal so there is no way you could've ever had optic neuritis." WHAT???  When I went back to the MS specialist she said she had an in-depth conversation with my neuro-ophth and she explained to the MS doc that VEP is not the "golden standard" and that if the optic nerve looks fine then that trumps VEP results.  She also said that my VEP's were so severely abnormal that I should be blind!!!  I'm totally confused.  Has anyone ever heard of this???  

[Wobbly]

Hi there...this is the first time I've heard of this...wow... I wonder what your VEP meant then??  maybe the machine was out of wack??  

Let us know if anything come out of this??

take care
wobbly
dx

[cheekyholly]

Well, when I had all the EP testing done the technician kept repeating the VEP portion(approx. 20 times).  He seemed a little scattered and we moved on the the remaining portions of the EP testing. He received a page and excused himself from the room.  Upon returning, he apologized and explained that he had to confer with a co-worker to make sure he had the machine on the correct settings.He said he was correct and he had it on the right settings but was just second guessing himself.  We completed the other portions of the testing but before I left he wanted me to do the VEP one last time but it really turned in to 10 more times.  

When I went back to visit the MS specialist for the EP results I explained what happened because I thought it was odd.  She had already talked to the head of the department about my results and he talked to the tech who performed my EP testing.  The tech told the dept. head that the reason he kept repeating the exam was because the readings were so severely abnormal that it was hard for him to believe.  

Yes, very confusing...

[cassrox]

So this neuro-ophamologist pretty much considers VEPs to be lie detector tests?  

Boy, those of us in limbo who have been accused of lying or being dismissed as having a mental disorder have a tough enough time, and to find out there are doctors who have that kind of attititude towards a pretty standard procedure used in the diagnostic process for MS!

I guess, in a way, that's like some believing in fibromyalgia and others saying they don't. The medical profession is so scientific in many regards to be so subjective in others. Strange to me though that a patient's "subjective" symptoms can be so easily dismissed by the very same people who often form "subjective" opinions about a person's heath or diagnosis.

Tired and frustrated in Limboland,
Cass

[cheekyholly]

I'm beginning to think it's all a load of ****!  How can you get such conflicting opinions from people who are supposed to be the professionals of the professionals.  The MS neuro said she believes I have CIS; therefore, if I had another attack that would constitute a diagnosis of definite MS.  Well, I went back two weeks ago with another attack and what do I get?  She says to wait until after the first of the year to repeat the scans and go have some acupuncture.  WHAT?!?!  wow, I just realized I'm ranting...

[cassrox]

Rant on! That's what we're here for. I totally understand how frustrating it is to have something wrong with you that makes such a great impact on your quality of life only to feel jerked around.

I hope you get some answers soon.

Cass

[Quixotic1]

Okay, now.  We haven't had one of these for a long time.  You done an' got yourself a dufus idiot of a neuro-ophthalmologist!!  Wow!! We have heard some doosies of inaccurate statements, but this takes the cake for this month.  I will add this and it's variations to our thread and Health Page, "Lies My Neurologist Told Me"!!

Now, this doctor (?) is sooo wrong as to make me tell you to jump and land running!!  Run hard and far!  This doc has no business even practicing medicine.  I was hoping, when I saw your title that the doctor had some reason, based in science why she didn't use VEPs.  Not so.  She is just stupid.

The real story.  The VEP is a very good test to see if there has been a past insult to the optic nerve or an ongoing one which may be below the the ability of the patient or doctor to notice it.  It is the most useful of all the forms of evoked potentials in adding evidence to the diagnosis of MS.  It is not a perfect test, but it can be darn good.  A positive VEP give evidence that points toward MS.  A negative VEP say nothing helpful.  A VEP can never be used as a litmus test proving MS or disproving MS.  It is help.

Now here is the clincher.  Supposedly this doc has extra training and education with regard to neuro-ophthalmology.  Not so in this case - well, maybe she signed up for the courses, but clearly attended the Tiddly Winks course next door instead.  ON EXAM EVIDENCE OF OPTIC NEURITIS - in the form of a slowed signal - CAN BE SEEN IN PEOPLE WITH DEMYELINATION OF THE OPTIC NERVE ONLY IN 36% OF PEOPLE.  That means in someone who TRULY has or has had optic neuritis, when the doctor looks in their eyes, he will see the evidence in only a third of the people.  Two thirds will have a normal appearing optic disc.  This is because the site of myelin damage is too far back from the eye itself to see damage on physical exam.

I can't believe that your MS Specialist would accept that kind of untrue drivel from her.  A normal exam cannot "trump" anything, because the exam is more often normal than not!!!  Clearly this doctor views patients first as adversaries.  How condescending and arrogant!  

Would you like to see some scientific sites where this is shown?  WE on the forum have known this for....well...forever!

What a loser!!  Get away!!  Be afraid, very afraid of this "doctor", lol.   RUN!

Now, what were your results?  It is possible that the VEP was messed up, but that doesn't change any of what I said.  Sheesh!

idiot.....dare I say it????....yep, I do.....STUPID!

Quix  - mad and getting madder

[cassrox]

I know what you mean Quix about being mad over this.

[cassrox]

Geez! I can't type tonight. Keep hitting wrong buttons and posting prematurely.

Anyway. there's plenty of intelligent, caring doctors out there, but so many of us end up dealing with birdbrains like this over and over again, and we can't help but getting our blood pressure up when we hear about others facing the same &^%.

Quix is right, the doctors shouldn't be allowed to practice!

[HVAC]

When I went to my MS Specialist with abnormal VEP and BAER  he told me he does not put any stock in Evoked Potentials. He said we do not even do them anymore.  Then he got up giving a lecture at an MS meeting last month and talked about Evoked Potentials as an important diagnostic tool?

[b125]

I can't believe a neuroopthamologist would even bother to use a VEP if they supposedly don't believe in them.  That is just a waste of both time and money for the patient, as well as a huge source of (at least until something is actually DONE with the results) stress!

Quix thank you for your information about the very low percentage of people that demyelination can actually be seen in. Doctors don't always bother to mention this sort of very important info to us, and certainly it is in everyone's best interest to be able to interpret results for their selves, if the doctors aren't doing very well.

I never actually had a VEP done. I felt sort of left out, as if some monumental test of great importance has been skipped.  Now, I'm not so sure. The regular opth resident who originally saw me had noted that there was no visible demyelination, but even he said that that didn't mean it wasn't there. Three cheers to him (I am actually considering making him my regular opthamologist, even though he's not directly covered by my ins!), but somebody needs to get some of these other docs to go back to class!

[Quixotic1]

Hi, "b125"!  Long time no see!

Q

[Deb61]

I love Quix's explaination about your neuro-opth. signing up for the Tiddly Winks course while others were getting their training next door.  It appears that your MS neuro skipped out and attended the "TW" course as well.  Or was it the "Go to Bat For Them" or "Circle the Wagon" course?      

[twopack]

Just so you don't feel alone out there:

Two weeks ago my neuro "presumed MS" because of symptoms, brain lesions on MRI, and abnormal VEP (right eye) interpreted by herself.  She said to come back in two weeks to talk treatment.  In the mean time she ordered a cervical MRI and ophthalmology records from a past episode of partial vision loss.

I went today prepared to talk treatment.  Instead the doc denied her previous interpretation (and by the way, this patient is NOT nuts!) saying the cervical MRI is clear of lesions and the report referenced an arterial clot in the left eye so doesn't confirm ON.  So why do the test if you choose to disregard your own results???  And now she says the brain MRI lesions are probably just from hypertension.  Has no clue about all the symptoms.

I'm joining the rant.  Can't these doctors see that the whole is greater than the sum of the parts?  Do they enjoy playing with our lives?  POWER LOVING  IDIOTS!!!!!!!!!!!!!!!!!!  I've lost my respect for the lot of them.

~Mary

[cheekyholly]

Ha ha ha!  Thanks, everyone, for your comments.  So, here are my VEP results...

            Latency       Amplitude
OD       183msec      4.6uV
OS       173msec      6.0uV

Normal <106msec   2-20uV

Impression:  Abnormal patterned visual evoked potential test due to severely increased latencies bilaterally.

Comment:  This is typical of demyelination.

The most crazy part of it all is that these docs are at one of the supposed best clinics in the US.  I'm not going to say which one but it starts with the letter 'U', ends with an 'A' and has the letters 'CL' in between.  I believe the neuro-ophth is pretty new out of school but my MS specialist has been practicing for almost 25 years.  I'm completely flabbergasted.  I have every symptom imaginable, 1 measly oligoclonal band, 10-12 atypical lesions and abnormal VEP bilaterally.  

Should I get a second opinion?

[cheekyholly]

Should I get a second opinion?

[Guitar_grrrl]

It couldn't hurt...Though it sounds like you have a good MS specialist.  I'm with Quix on this one.  Get a different Neuro-ophthalmologist!

Just my $.02
Guitar_grrrl

[cheekyholly]

But the MS specialist actually AGREED with the neuro-ophth!!  And, when I asked the neuro-ophth what she believed caused the severely abnormal results she said I could have blinked or looked away.  The tech performing the VEP repeated the test AT LEAST 30 times.  So, I guess I looked away or blinked every single time....doubtful.

[Quixotic1]

I am an alum of both the USC and UCLA medical centers.  The folks there are no more perfect than others we have found.   Some are great and some are dufuses.

Quix

[Quixotic1]

For validation I posted the following question on the Expert Eye Care Forum:

************************

<<  I am a Co-CL on the MS Forum.  One of our members was told by her neuro-ophthalmologis that the VEP was useful on in detecting malingers.  Her results were


            Latency       Amplitude
OD       183msec      4.6uV
OS       173msec      6.0uV

Normal >>


**************************

And this was Dr. Sandra Brown's answer:

<<>>

So an additional voice agrees that your VEP is not beyond a reasonable answer.  Though she didn't address the number of people with normal fundoscopic exams and ON she does agree that the eye exam is normal in acute retrobulbar optic neuritis.

And notice she called your P100 latencies "mildly prolonged."  

I can provide you with at least three sites which verify the "greater than 60%" numbers I mentioned earlier if you want them.

It is my opinion that both of these doctors are off-base - the eye doc especially.  Perhaps the MS neuro gets what he knows about VEPs only from this department and the department party line is out of whack.  

Quix

[Quixotic1]

I have another bit of info that you won't like.  The negative test for NMO is an antibody test that is only positive in about 3/4 of those with NMO.  So 1 in 4 people with NMO will have a negative test.  A negative test result does not rule out NMO.  Did the eye doc say it did?

Quix

[Guitar_grrrl]

Ooops, I goofed, there...Quix knows what she's talking about!

"...If I only had a brain" (start whistling here...)
Guitar_grrrl

[cheekyholly]

Hey Quix!  Thanks for digging deeper for me.  The additional info is great!  I find it interesting how one doc interpreting my VEP says I have "severely increased latencies" while another says they are only "mildly prolonged".  Just goes to show you how much gray area there is and how a diagnosis is basically up to the doctors personal interpretation.  I'm in no way gung-ho to pressure a doc into a diagnosis I'm just fearful of what the future holds especially since I know how important early treatment is.  And, now it's even more fearful to hear, see and read so much conflicting information.

As for NMO, the doc completely dismissed that possibility.  She felt since I tested negative and my spine MRI was clear that pretty much put me out of the woods.  I've read enough to know I still have a small chance of having it however, I don't believe NMO is the real culprit behind my symptoms.

On a positive note...I'm heading to the optometrist tomorrow to get fitted for prism lenses to correct my whacko vision.  Hopefully, I'll be back behind the drivers seat soon!