evoked potentials - normal

[Mike_Shuswap]

Well, I got the last of my test reports (evoked potentials) by phone call from my GP last night.

Visual - normal     no surprise as I have no noticable eye problems and this is my second VEP

Auditory - normal  a bit surprised because of loss of hearing in my right ear and loud tinnitus in R ear

Somatosensory - normal (this is the one where they use electric shock torture on your wrists and ankles) quite surprised because of how I feel. Numbness in hands, fingers, arms that gets better and worse but never completely goes away. Uncoordination in hands and feet. Gait problems (sometimes), fatigue, etc...etc..

When I heard Monday that my LP came back possitive for O bands I thought here we go, getting close to a dx, but now I wonder....

So, I've got at least 9 lesions in my head, O bands in my CSF, and a bunch of MS like symptoms. I believe I've been tested for every other conceivable disease, and all proved negative. Now I have to wait for my next MRI in March, and my next Neuro appt in May. Seems like a life time away. I thought I had learned to be patient by now.

My current dx is 'demyelinating disease, possibly MS'

Anyone know what's the likelyhood of MS with normal evoked potentials?

[Mike_Shuswap]

The Doctor didn't really want to see me. Turns out he wrote himself a note to phone me when the EP results came in, which he did, then the receptionist saw his note and thought she was suposed to phone me to come in. So I had a lousy fitful sleep for nothing. Oh well, onward.......

I think I've been tested for every remotely posible thing now, according to my GP, so I'll have to wait until my next MRI in March and my Neuro appt in May.

Sam, I think  there are quite a few demyelinating diseases. My old Neuro (he doesn't know he's fired yet) and the Neurosurgeon who took the brain biopsy both said it's a "demyelinating, MS type of disease". The new Neuro said he is 99% sure it's MS, but he wanted me to do the last batch of tests, EP's, Chest CT, LP, Gallium scan, and whatever they tested the 10 vials of blood they took. He also wants to see the next MRI, he said time is important too. He has the LP results by now, so he knows I've got O bands in my csf, and hasn't contacted me.

I do dabble a bit in the MS forum. They've been helpful and supportive, but for some reason they wont diagnose me....LOL

Mike

[silkcut]

Hi Mike

Well, the good thing is that so much has come back normal.

My sceptical grey matter would be saying 'Ah! but were they the right tests?!'

I am reminded that my deaf test registered normal even though I have tinnitis and cannot actually hear people sometimes. But that's like my eye - the mechanical bits are fine, the prob is deeper in the neural pathways the opthalmologist told me.

What other demyelinating diseases are there? And have you consulted with the very informed and helpful people over on the MS forum?

May sounds a long time off...

bestest
samxx

[jibjen]

Good Luck Mike.

JibJen

[StormyRenee]

Try to remain positive....I hope you do get good news! My fingers are crossed....
Please let us know......
Take Care, Theresa

[Mike_Shuswap]

Hi Theresa, nice to hear from you! And I know you know how I feel...the same as at least 100 people in this group.

binx, thanks for your wishes! People like you, offering support, are what make this group so wonderful!

I just got a call from my doctor's office...he wants me to go in and see him tomorow.....hhmmmmm..the plot thickens. As far as I know he's given me all the test reports I was waiting for. Now my wife says she's nervous. I told her the Dr's gonna tell me I'm cured! She doesn't believe me.

I'll let you know      Mike

[illinwithoutacause]

hi mike~

i'm binx--we haven't yet communicated, but i've been following your story.  it sounds like you are getting closer to getting some answers, but how frustrating to wait so long between appointments!

from what i have been told and what i have read, it is possible to have normal evoked potentials and still have MS.  when i was being screened for MS, the tech that ran my VEP test broke the rules and told me that my results were normal to help me feel better.  he told me that a normal VEP doesn't officially rule out MS, but in the absence of other diagnostic criteria (i have no lesions and a normal LP) that my risk of MS was very low.  he swore me to secrecy, but since his brother has MS, he said he understood the level of anxiety people experience and hated the idea of me stressing about the results before the doctor got the report.  he was very kind.

i hope things become more clear for you very soon.

best wishes,
binx

[StormyRenee]

Hi Mike,
Seems like all we do is wait......I know how ya feel.
I have normal Evoked Potentials tests. I have 15 brain lesions and a  plethora of MS like sx from head to toe.I'm awaiting my LP results as we speak.
Yes you can can normal EP's in the beginning and still have MS.
Please Take Care, Theresa