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147426 tn?1317269232

Can You Can Have MS without MRI Lesions?

I know we have covered this before, and I really should spend more time on the National MS Society site, but this is a quote from the NMSS Sourcebook on MRI's.  It says everything so much more succinctly than I do when I'm "winging it."

"Diagnosis
Because MRI is particularly useful in detecting central nervous system demyelination, it is a powerful tool in helping to establish the diagnosis of MS. It should be remembered, however, that approximately 5% of patients with clinically definite MS do not show lesions on MRI, and the absence of demyelination on MRI does not rule out MS. Also, since many lesions seen on MRI may be in so-called "silent" areas of the brain, it is not always possible to make a specific correlation between what is seen on the MRI scan and the patient's clinical signs and symptoms. In addition, with advancing age (probably over age 50), there are often small areas seen on MRI in healthy people that resemble MS but are actually related to the aging process, and are of no clinical significance."

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_LIB_sourcebook_mri

Guys, not to restate the obvious but this is 1 out of every 20!!!  I'll keep looking, but even my MS Neuro, whom I consider very smart, felt that MS was ruled out by normal MRI's.  I need to understand whether the 5% got diagnosed because they presented so classically - maybe with Optic Neuritis, more than one clear attack, a very positive LP, and a tatoo on their forehead that says, "I have MS!"

Quix
117 Responses
Avatar universal
I don't know, but Im one like you that have the three frontal lobe lesions and told it has nothing to do with MS.

Today I had the feeling of numbness on my ears and scalp!  Ugh.

I'm not sure if you answered this but I'll ask again lol  I had Chicken Pox while I was pregnant with my first daughter.  Would this cause "white matter disease" or the lesions in my frontal lobe?

Lisa
147426 tn?1317269232
Not to my knowledge.  I've never heard of it.  Quix
Avatar universal
Thanks it was worth a shot to figure out what those pesky little things are doing on my frontal lobe.

Thanks :)
Lisa
Avatar universal
I fell into that 5% with a normal MRI,except for cortical atrophy.

No,I do not have I HAVE MS tatood on my forehead.

It was clinically DX'd after 2 years of testing and evoked potenials,LP plus all the other test of exclusions.

I also had ON and transverse myelitis 7 years prior.Precursor of MS in some.
Avatar universal
I have been diagnosed with MS since 1990.  I have never had a positive MRI (brain, cervical, thoracic) and my LP was also negative (that was done way back when).  My neuro is a world renowned MS expert and has always insisted that despite these negative MRI's, I do absolutely have MS.  It's really hard to take that interferon (which I've been on for about 15 years) when I can't help wondering if I really even have MS at all.  I do have MS-like exacerbations and MS symptoms, no doubt about that - but no lesions on MRI?  That leaves me scratching my head.
256161 tn?1196882646
I couldn't help but feel like I am in the same boat as you guys. I Had my daughter in July of 04 and 3 months after that I started to have really weird symptoms. My legs felt heavy and wobbly and I would go to pick up my daughter and would have to sit down from severe tingling and weakness. I have horrible pain behind my left eye and a foggy feeling at times. I have creepy crawly feelings all the time and I feel like I cannot tell if water is too hot or too cold sometimes. I feel like I am going to pass out when I get in the heat. I get dizzy when I close my eyes alot now and I have noticed I have been getting car sick alot lately. I cannot even cough without getting dizzy and having ringing in my ears. I have had all normal MRI's , but have had an abnormal Evoked Visual. I have yet had anyone who was willing to give me a lumbar due to the fact that all MRI's are normal. I work for a lab and we have started doing a new test called Anti-Myelin Antibodies CNS and Peripheral. It checks 6 titers. 3 titers are for your CNS (central nerve system) and 3 are for Peripheral. Elevated titers in the CNS area have been researched to link to MS and the Peripheral to Gillian Barre syndrome. 2 of my titers for CNS were positive and elevated and 1 for the peripheral was too. I am in the middle of switching Neuro's. I feel like I am running out of people to talk to. I have a grandmother with MS and an Aunt with MS. My grandmother and I have a lot of similar symptoms. I wish I could have found a doctor like you and Patti66 that would listen and know that there is a 5% chance of clear MRI. I think some of the neuro's around here are not fully educated in that area. I am even willing to travel somewhere to get another opinion. Any suggestions?
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