Evoked Potentials Negative Waiting on Lp

[Llexi]

I got the results back from the Evoked Potentials and they were normals. My doctor is waiting on my LP (which I will be doing on friday) in order to "confirm" her thoughts of MS. She diagnosed me a couple of months ago and now all of a sudden she is in "the gray" about if it is or not. The other places that I have been referred to for a second opinion do not have openings until August! I don't know what else to do. From what I've read is you can still have MS if your LP and the EP are negative... is this everyone else's understanding as well? They have tested everything else out and it and really only be MS as my doctor says "she feels and knows in her guts that its MS"

Thank you LLexi

[MelissaW33]

I had a normal Evoked potentials and abnormal MRI and Lumbar which then I was diagnosed with MS.

With the LP, I got the worst headache, I couldn't stand or walk. I ended up needed a blood patch.

Hope yours went well.

[Llexi]

Thank you everyone for the thoughts and suggestions. Yes they were MS Specialists. One place in particular my best friend's dad goes (he's been diagnosed for 20 years) and he has tried to get me on the cancellation list. Issue is that the doctor is taking like 2 months off from June- August for vacation. I'd love to take a 2 month vacation!

My MRI shows ( from December)

Multiple punctate-linear-ovoid T2/FLAIR prolongation foci of
white matter T2 prolongation without enhancement consistent with multiple
sclerosis without active demyelination on imaging.


1. Stable changes of multiple sclerosis.

2. No imaging evidence of active demyelination

Tomorrow is my LP, I'm very nervous as I am highly prone to getting severe migraines and from the way the nurse described how the test could go I may get a headache possibly a migraine... I'm trying to keep hydrated as they told me to. They also said increase my caffeine as well... Said it may help, they don't know why it does though...  

[babybear2200]

Hang in there Llexi, we all know how frustrating the diagnostic process can be, especially the waiting, and we are here for you.  I am going to agree with everything Lisa said earlier. Are the other places you were referred to MS Specialists? Can you ask to be placed on a cancellation list?

[LisaJF]

It is typical to become increasingly frustrated through the diagnosis path of "whatever" you may have.

Even if your Neurologist stated they feel that it is, the retracts the statement, that is how sensitive Neurologists are in making a definitive diagnosis if a patient does not fit the 100% lovely picture with 0-bands, 3+ more areas of the brain (periventricular, juxtacortical, corpus callosum (picture perfect dawson fingers, etc.) filled with lovely T2 hyperintensities.  

However, considering that your MRI has increased lesion load in comparison to the previous one, that would definitely raise eyebrows - wouldn't you say?

My lumbar puncture was clean x2 -- save for my IgG Synthesis rate was slightly elevated the first time I had one.  

I pray that things will go a little more smoothly for you to finally get the diagnosis and doing something about it. (DMDs or whatever it is that you have.

Welcome to the forums btw :)

[Llexi]

Yes I have had 5-6 MRI's since July. My brain MRI's have all showed increased in lesions that are highly suggestive of MS. My lumbar MRI is clean as well as my cervical. I started off with one lesion in July but when I had the next MRI in October, my neurologist stated I had so many lesions he stopped counting... Thats when they originally suggested MS (based upon my symptoms and MRI's). They have ruled out Lyme, syphilis, sarcoidosis, B12 and D deficiencies as well as many others. My LPs just came back negative... ugh  i just am getting so frustrated!

[babybear2200]

Hi Llexi,
I was diagnosed today with RRMS but my LP was negative for everything. He said it's not unusual to see no og bands (?) and was more interested in the other tests he ordered to further rule out Lyme, sarcoidosis, and a couple others. Have you had MRI's?  

[HVAC]

It took a LP for my Neurologist to diagnose me with MS. I had ever test positive for MS but they would not diagnose it until I had a positive LP. Someday it will be simple blood test. Until then it takes what it takes.

Alex