Can you have MS without brain or spine lesions?

Posted by tkdesign @tkdesign, Sep 2 8:28am

I've been dealing with a mystery nervous system meltdown for over a year. Last year developed sudden leg numbness, weakness, tingling for a few weeks, then it went away. Then over winter developed tinnitus in one ear. Then this spring had episode of joint pain then pain in finger tips and numbness in fingers. This went away then got the leg numbness back again a month or so later, but way worse, and spreading to both legs, both arms, hands, torso and whole body feeling like it's buzzing or tremors inside. I had MRI of brain, spine...reports said nothing wrong ( except multiple perineurial cysts in cervical/thoracic). I showed my reports to several specialists in neurosurgery and pain medicine - one said arachnoiditis, one said no i didn't have that and wants to send me to MS clinic for review. Does any of this history sound like possible MS? Or something similar? I've been miserable for months with this recent flare. Only steroids help. I also had high EBV titers with reactivation shown since last year.

Interested in more discussions like this? Go to the Multiple Sclerosis (MS) Support Group.

sandy8043 | @sandy8043 | Sep 2 2:36pm

Did your MRIs include contrast dye?

tkdesign | @tkdesign | Sep 2 3:30pm

In reply to @sandy8043 "Did your MRIs include contrast dye?" + (show)

@sandy8043 no

eachdayblessed | @eachdayblessed | Sep 2 4:26pm

Need the contrast dye. To verify MS need the lumbar puncture procedure.

tkdesign | @tkdesign | Sep 3 6:58am

In reply to @eachdayblessed "Need the contrast dye. To verify MS need the lumbar puncture procedure." + (show)

@eachdayblessed I am surprised no dr ever said I needed a contrast exam. I'm afraid to do LP - if i had arachnoiditis, a lumbar puncture could only worsen it, or even cause it if i didn't have it

eachdayblessed | @eachdayblessed | Sep 3 1:41pm

I’ve learned in my health journey that I have to ask lots of questions and have second opinions. I had the lumbar puncture after much family worry but the Dr. at Mayo explained the procedure and the risks (which was minimal). I had mine done at Mayo with zero problems.

brhb2011 | @brhb2011 | Sep 3 8:45pm

I had multiple mri’s and my initial neurologist said no MS because I didn’t have Dawson finger lesions. Eventually the lesions showed (3 years) the Dawson fingers. I would go to the MS clinic and see what they say. MS can be VERY tricky to diagnose