confused

[princess73]

well, i am still confused. some have told me if a spinal and evoked is negative, there is no way it is ms. others have said the opposite. so what is the answer? my neuro said that it can't be ms, then referred me to another neuro who specializes in ms!?! any ideas? I hope you all have a happy new year and that the new year brings us all more answers and minimal symptoms.

[Heather3418]

I can only tell you from my first evoked potentials, that all was negative...and this despite 5 lesions in my brain and one in my spinal cord.  It wasn't till later in my disease that my evoked potentials showed some damage.

I hope you get some better care and answers from a Neuro that specializes in MS.  I pray for answers for you....

Heather

[Quixotic1]

Hi, Hon.  Whoever told you that a negative evoked potential rules out MS was not very knolwedgeable about MS.  The test is really only helpful when it is positive.  In that case it is another piece of evidence pointing toward the diagnosis of MS.

When the evoked potential tests are negative, you have very little additional information.  The VEP will be negative in as many as 40% of people with MS, the SSEP will be negative in a much higher percentage of MSers and the least useful is the Auditory EP which is infrequently postive.  (Note here:  my % numbers may be off a bit, but the point is still true.  I just don't feel like looking up the exact figures)

I am really glad you are seeing an MS Specialist.  I hope he/she is good.  They vary also.

A negative spinal tap occurs in about 25% at time of first diagnosis.  In the past they did spinal taps far more frequently during the person's life to monitor the disease ( before MRIs), so they know that about 90% of people "at some point during the course of their disease" will have a positive spinal tap.  The fact that both of your "auxillary" tests are negative, lessens the likelihood of you having MS, but it does NOT rule it out.  Remember the diagnosis is much more dependent on the history of your symptoms, your physical exam and the results of the MRI.

Very few docs will be willing to make a diagnosis of MS with a negative MRI, negative LP, and negative EP's.

Good luck, Quix

[Wobbly]

could you let me know what evoked potenial means?

[princess73]

Thank you for your input. Tomorrow is the big day. Just to let you know, my brain mri was done when I first started having symptoms (2 months ago), and the radiologist said possible demylenation due to some lesions in several different areas. That is when my pcp assumed that it had to be ms. I guess my next mri will help determine whether ms is really a possibility. I'll let you know what the doc says tomorrow. HAPPY NEW YEAR!!!!

[princess73]

I am sure that others can explain better, but I can tell you that the evoked potential tests to see if there is any nerve damage.

[Quixotic1]

An evoked potential is a test of whether and "how fast" a sensory signal is making it to the brain.

In the visual EP they place electrodes (like for an EEG) on your head and have you look at a changing visual pattern.  They can precisely measure the speed with which the visual signal is registered in the brain.  They know (from 100's of 1000's of tests) the normal speed that the optic nerve will conduct the signal.  If there has been demyelination or damamge to the optic nerve the signal will be slower and that is what gives a normal or abnormal result.

In Somatosensory EP they use stimulation on the limbs and measure the signal conduction time to the brain.

Princess, With neurological symptoms and lesions on the first MRI MS is already a definite possibility.  If the next MRI is unchanged, that does not (NOT) remove the possibility.  And you should be monitored every 6 months to a year, especially if the symptoms continue.  We will be waiting to hear your results.

Quix

[gooddays]

Hi, You may feel confussed, because at some point we all did.  You see all of us went down the road you are going now. There is something called clinical MS. this is when you have all the symptoms, but your MRI test comes out normal, but the spinal staps show ogliconal bands (refected on your spine) your neuro considers that in time the lesions will be showing up in your brain in the near future.  I hope that if you are requested to have a spinal test done, it comes out negative to.

When you see your MS specialist tomorrow, make sure that you have with you a list of all the questions that would like to have answers to, I do not know if this happens to all of us, but once we are at the doctor's office we forget almost everything we want to ask, but if we write it down, we have a better chance to have more information.

As Quix said we will waiting to hear your results.  Remember what I always say, WE have MS, but MS does not have us!!!!!

Zulma

[princess73]

Well, the ms specialist does not think it is ms. She said it isn't fibromyalgia either. She thinks it is an auto-immune disease and that I need more testing. YIKES!!! She did say that tests can show up negative for a year or longer after symptoms start and then all of a sudden show up positive. So, like most, I will have to wait it out. Thank you for all of your thoughts and feedback.