VEP result came in the mail

[Fluffysmom]

Well, I kind of figured it would be normal, although my vision is not.

IMPRESSION:

Normal pattern reversal visual evoked potentials bilaterally.

I have some questions for my neuro-ophthalmologist on Monday, such as :

"Can my blurred vision be from dry eyes from Sjogren's?

Do I have enought positive signs of Sjogren's to warrant further testing?

Can you recommend a good rheumatologist, specializing in auto-immune disorders?

You stated that some of my lesions were located in areas that MS lesions are found, and that my heat-related vision event could have been Uthoff's phenomenon.  Did you communicate this to Dr. Y.? (ms specialist)"

Should I ask him if Dr. Y. is a good neurologist to continue with, in his opinion, or if he thinks Dr. D. or someone else might be more able to work with my multiple issues?  He seemed like a genuinely kind and caring physician.

What do you think?  Any questions I should add or delete?  

Thanks,

Kathy

[MrsAristotle]

my VEP was positive, but still no diagnosis. Go figure its a strange world in neuropathy LOL.

[Fluffysmom]

First, let me say thank you for your kind support and friendship though all of this testing and waiting and so on.  This is the best bunch of people I've run across, truly.

Heather, my VEP was the checkerboard pattern, where I stared at the red dot in the middle of the screen after they attached some electrodes to my scalp..  It took a long time, as I think I lost focus a few times and the machine started over.  The tech kept telling me to relax.  

First they did larger squares, and then smaller squares.  It took a while for me to realize that the patterns were switching, and it came as a surprise.  I guess my eyes were registering it the whole time, as the report said "There were well reproducible waveforms bilaterally."

I would guess that if it didn't have the proper waveforms, it would mean that the signal from my eyes to my brain weren't getting through properly.  

Hugs to all,

Kathy

[Heather3418]

I am surpriised how many people have the VEP and despite their symptoms, the test is normal.  I don't know which test is was that I had some years ago, where they have you follow a fast moving red light going from side to side, but I flunked that one.  I also flunked the one where they blow air (hot and cold) in your ears and turn your head side to side, but that one was a flop.

The checkboard pattern, I did fine on.  The auditory test was slightly abnormal.  I just can't keep track, which test is which.

What did they do during your VEP test, so you can help refresh my memory?  Kathy I can't even remember what an abnormal finding means.  Utoff's I have heard of.  Hope you can help me out, to help me remember.

Hugs,
Heather

[doni54]

Hi Kathy,

I'm sorry you still don't have any clear cut results that will lead to that dx.  My VEP and EEG is scheduled for Feb 6 and I guess I will hold my breath until I get the results.

Oh how grand it would be to get a dx.  I'm so tired of thinking about my health, as I'm sure all of you that share this limbo with me are.  Not a day goes by that I don't hope and pray for all of us to get our answers.

I am so glad that I share this limbo with some of the best people I know.  Together we will all get through this and be better when we get passed all the trials and tribulations of seeking our answers.  I know this journey would have been impossible without all the friends I have here.

Hang in there, Kathy, we are all pulling for you to get your dx.

Hugs,
doni

[Sarahsmom46]

We all know the frustration too well on getting results that are normal or negative.  It tells us what we don't have, but doesn't help with telling us what we do have.  We have to just keep chipping away at the diagnosis and keep asking questions.  I believe that eventually we do get our answers, especially you as you are very persistent. I hope you can get some answers to your excellent questions from the ophth.  

Also, I think your search for a good rheumy is worth the time and trouble as they can be very good at sleuthing out autoimmune diseases.  I had one once who volunteered to take all my medical reports home for the weekend and go over them with a fine tooth comb several years ago.  I didn't take him up on his offer, something  I later regretted especially after he stopped taking my insurance and I had to go to someone else.  Good-luck with the search.  

You are in good company in this land we call "limbo" lady.

Julie

[Lulu54]

Kathy,

I hope you can find an excellent rheumatologist out there to help you sort out all these test results.  Surely there has to be something jumping out of the pack of possibities ....

I'm sorry about the ongoing frustration you keep facing,
Lulu

[Fluffysmom]

I was surprised to see this envelope so early; I just had the VEP on Tuesday the 20th.  I thought I'd have to wait until my follow-up appt. on Monday to know for sure what the results were.  At least this way I know which questions to have prepared!

I don't see my ms specialist until April, and then she may schedule my 3T brain and spine MRIs; that's the kind of waiting that really sets my teeth on edge.  If that patchy area on my T spine is really a lesion, then we're wasting time.  Precious time.  

I feel self-doubt creeping in...  Maybe the tremors aren't related to anything else, maybe the many many brain lesions were caused by migraines that I didn't realize I had, maybe my being dizzy and off-balance is from my Lyrica....

I had vertigo bouts long before I took Lyrica or Neurontin, and was taking Neurontin for years and then Lyrica for several months before the dizziness, lack of balance, tremors and fatigue hit so hard last February.

Yup, waiting and wondering is frustrating, crazy-making business.  It's about time for at least a few puzzle pieces to be fit together, OK?  

I saw one not-good rheumatologist a few years back, am hoping for a very good one this time around.

Kathy

[biowham]

It is frustrating, Kathy. Waiting for that stupid envelope or call from the doctor only to find that it does NOT bring an answer really one way or the other...it can just wear you down. I hope you get a good referral to a rheumatologist who might be able at least to look at everything and try to put the puzzle together.

Bio

[Fluffysmom]

As much as I wish we all had our answers, I'm glad that you are here in limboland with me to help make the waiting more bearable.  

I was just reading your post about your upcomining appointment on Wednesday, and will be keeping you in my thoughts on Wed., crossing my fingers and toes and all that good stuff.  

Hugs,
Kathy

[Wobbly]

these are good questions to ask...I understand so much how you feel...On Wed I go to the specialist and get my VEP results...which I'm pretty sure are Neg... so I have questions for her to as to why my eye's are so blurry and double vision??  

hang in there...I don't like limboland either...but we do have each other here...

take care
wobbly
undx

[Fluffysmom]

Ah, I needed a little sympathy; thanks much!  It's frustrating, this limbo stuff.  

Kathy

[biowham]

Ugh. I'm so sorry that the test results are not bringing clear answers for you. I think your questions are very good ones, all necessary to tease apart the different potential diagnostic threads.

Bio