Questions about Visually Evoked Potentials

[RedFlame]

I am going to have all 4 potentials tests done next week.  

I am concerned about the visual test as I have begun having some double vision.   As brought up in a different thread--I now have problems focusing on anything for very long.  I know that this test requires I focus on the red dot.  
My questions are:

How long does the checkerboard portion last?

Will there be more than one phase with the checkerboard?

  If I can't stare at the dot the whole time will the test be thrown out or unable to be scored?  I just don't want them to have to throw the test out the window.    


Thanks,   Red

[Sumanadevii]

Red,

There are no remissions.  However, PPMS can level off after years.

[RedFlame]

sumanadevii,  there are no remissions in PPMS  that is why it is frightening.  

[RedFlame]

Hi Tonya,  

I missed you so much when you were gone, and now I'm so glad that you are back:-)

It is a very scary time, I feel raw around the edges.  I have been crying alot and it just so happened that the diagnosis was confirmed when the people that support me are on vacation!  Literally on vacation.  

Thanks too for the encouragement about my specialist.  I really liked her and we clicked well.  She didn't force these tests on me, she talked about eventually having them done and I said let's just do them.  

I am grateful that I have a good doctor and have the U of M Ann Arbor in my backyard so to speak

Thank you for your reassurance and support, it helps me so much!!

Red

[Sumanadevii]

Your MS is much like mine.  A big downward spiral.  The good news in PPMS is that it can stop any day and no more spiralling!!!  My doctor wants to see me tomorrow.  The steroids haven't worked.  I guess that is what she is going to tell me.  I might as well not have taken them.  Everything is back and worse in just two short weeks.  

The scooter, Red, will give your life back to you.  My son gave me one as a gift.  I am able to cook a bit and I can run it around the house putting things away.  I still use my walker but there are days that is impossible...like today...lol

[tonyad]

    First off, Here is a BIG HUG for you my Friend!
No worries Ok?  Your Doctor is doing an awesome Job to make SURE that things are dx and done the right way instead of a Crap shot in the dark!  like a lot of the doctors are doing here lately.

   Don't feel like you have to justify what your doctor is wanting you to do Ok?  This is a Very Scary time for you....it is scary to be dx w/ RRMS but when they throw out PPMS that REALLY throws a brick in your glass house!  

   You are in my thoughts and Prayers my Friend.....Everything is Going to be alright :)
<<>>
~Tonya

  
  

[RedFlame]

Hi Helen

Thank you for being the voice of reason.  You're right, ALS doesn't include loss of sensation or any of the symptoms of MS.  And double vision I'm sure isn't there.  

I think I feel really raw right now.  When she told me what I had I thought that would be the end of testing.  So now there is more.  twopack is right, I do feel like I have been on the witness stand for a long time.  While being on the witness stand I deteriorate.  

I know there is no treatment PPMS.  I just want the nightmare to stop.  

Part of the problem is that I can't remember everything that happens during a doctor appointment.  I am getting bits and pieces back---hopefully I will remember the whole exam.

I am so tired.

Thanks so much Helen

Red

[helen41]

I heard your terror and looked up ALS.
"ALS does not affect a person's ability to see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions...". That doesn't sound like double vision.

I suspect she really is being thorough to figure out how best to help you through this

I'm so sorry you are suffering like this

[RedFlame]

Thanks for info from both of you.

Mary,  I don't know if you remember that my first LP was not administered correctly.  There was a breakdown in communication and the blood sample was not collected before the spinal tap.  There is a possiblity that this affected the outcome.  Yes, my LP was positive, she just wants more information about the O-Bands.  She wants to track the number, maybe becuase I have PPMS.  

She said something about having baselines for everything so she could track this disease.

I called my old neuro and asked her for the number of O-Bands.  She said that it was more than four becuase it was positive.  

My doc didn't say that I had to do these things, she brought them up and I said I would do them.

I just want all of this to stop.  I have had so many tests and I am deteriorating so quickly.  My thighs used to be weak now it is my calves.  Walking has become almost impossible.  If they stop all these d__m tests then I can at least they can order my scooter so I can get back to my life.  

When she tested my knee reflexes she couldn't get my right knee to move at all.  She tested some parts of my body and I couldn't feel where she was touching me.

I haven't had anyone to talk to about her confirmation of the PPMS.  But after her completion of the neuro exam I started to wonder if she was thinking about Motor Neuron Disease.  I can't think of anything more terrifying than ALS.  

OK, now I am crying.  I am so confused about all of this.  Quite frankly, sometimes I wonder if I am dying.    

[twopack]

Hi Red.  If I remember correctly, the whole test is the checkerboard.  It didn't really take very long.  It's done with each eye individually while the opposite one is patched.  You just kind of have to stare at the center where the dot is and keep your eyes open.  You don't really have to focus on anything, think or do anything while the test is done.  

I was vagely aware sometimes that there was a shift in the pattern but that is what they don't want you to react to.  That's why you just stare at the center and let the optic nerve send those images you don't even realize you are seeing.

This is one of those tests where the set up for it takes longer than the test itself.

I see that you have a repeat LP scheduled for Friday.  Any reason the doc wouldn't wait to schedule that until after these evoked response test results are back?  You might want to take some time to find out why the lab didn't report the number of O bands and if it is possible for them to retreive more complete results for the doctor.  

With a positive LP, clinical signs, and lesion on MRI already reported I just think I would want to see the results of these tests before submitting to another LP.  If any of these EPs are positive, how much proof do they want?  I know your first LP went smoothly but it is an invasive test that may not really be necessary.  

I don't mean to create doubt.  It just seems to me that doctors have put you through the ringer already for quite a while and now just continue to treat you as if you are a witness on the stand who needs to provide evidence for every detail of what is happening to you.  Just something to think about.  Sorry to have gotten sidetracked and mixed posts.

Mary

[ami9342]

I just had a VER (VEP) test done last week, the checkerboard part was pretty quick, about 10 min per eye. I hope it won't be thrown out if you can concentrate on that dot, cuz I couldn't even SEE there was a center square with my left eye. she just said stare at the center of the board, so that's what I did.