Do you always stay ‘suspicious for ms’?

Hi all,

I am wondering what happens if you have some lesions that are suspicious for demyliniation and ms, but other things come back negative, are you no longer ‘suspicious for ms’? Or do you just stay that way forever now?

I lost vision in my right eye last July (it’s still very blurry now and I can’t really see with it), they thought ON and an MRI in September showed general non specific changes to white matter with two lesions that appear demylineating and are suspiscious for MS. I just had (in jan) a spinal MRI that showed nothing new, and I have a VEP and lumbar puncture booked for next week, so I know I have a lot of info still to come and anything could happen.

However, if LP and VEP are negative does that mean my suspicious lesions are no longer suspicious? Or will they always be suspicious until something else happens?

Any advice welcome!

Thanks all

I do not know the technical answer to your question. My guess is that the passage of time with no further trouble is probably the best way to dial down suspicion levels. Let’s hope that happens in your case.

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Hi Norgeing24

Also not an expert, but I would think that they would remain suspicious pending other lesions showing up (fingers crossed no more appear).

I had 3 lesions in brain (that did not correspond to my symptoms), my LP was positive and VEP showed probable historic Optic Neuritis (left eye); and remained ‘Suspicious for MS’ ( for 9 years) until lesions showed up in my spine - which led to my MS diagnosis. As for the historic Optic Neuritis - that was probably 40 or so years ago.

Thanks For your replies.

@TheresaB - if you don’t mind me asking, why weren’t the lesions, positive VEP and positive LP enough for a diagnosis? I was assuming that would be enough.

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Because the positioning of the visible lesions did not correspond to the symptoms I had (pins & needles, pain, balance, fatigue etc.) which negated the positive LP, and the VEP being from an historic (40 years ago) episode of potential ON; the Neurologist decided that it didn’t satisfy the criteria for a dx of MS.

Okay, interesting. Thank you for sharing! I have my VEP tomorrow and LP on Monday. I still can’t see out of my right eye very well, and at this point I’m not sure if I want positive (and therefore a diagnosis and treatment) or negative findings and carrying on knowing I have these two suspicious lesions… argh

For what its worth, the 3 lesions in my brain have not changed since they were first spotted.

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