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Multiple Sclerosis Community
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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?
195469 tn?1388326488
bumping up for the newcomers
Avatar universal
I had all the MS test done=LP and MRI , MRI showed lesions and immunoglobulins are elevated but no MS. I have every classic symptom of MS and the dizziness is awful.  I had a sleep disorder test done recently and found out I have severe sleep apnea and since I have used my CPAP machine this week the symptoms are beginning to fade and I feel better.  The medical profession states that it is possible to get lesions from lack of oxygen during the sleep apnea.
Avatar universal
I forgot to state that I would have never believed for a minute that I would of had sleep apnea, when I went down to the sleep center I thought this is probley a wasted trip, I am so glad that I spent 2 nights and 1 day sleep test.  If your neuro suggests it -please take him or her up on it,  I have noticed that this week my joints don't hurt as bad and i have more energy and the dizziness is starting to slack off in its intensity-so everynight that I use it and get used to having that mask on which is used to get hard to I will feel better everyday !!!
Thanks for reading this,  it feels good to talk about it.
Avatar universal
question, what if they say you have  ms and you believe you dont have it and you take the avonex, what can happen long term
338416 tn?1420049302
GJO, if they say you have MS... then it's likely you have some sort of demyelinating disease.  It's very hard to get a doctor to sign off on anything neurological.  As you'll find if you hang out here for a while - many people remain undiagnosed, even with lesions.

And if the doctor thinks you have MS and should be on some sort of DMD, it's a good idea.  The DMDs slow down progression, and keep the flares from being too debilitating.
Avatar universal
I'm in agreement with taking the DMD.  Better safe than sorry.  Unfortunately, I fell into that "there aren't any lesions, so let's wait" category, and now I've lost vision in one eye and am 2 weeks post optic neuritis attack in the other.  I can't help but wonder where I would be if I knew what I know now and had pushed a little harder.  BTW, I do have lesions now, which isn't as much comfort to me as it is to my neuro. I sincerely hope things work out for you no matter what you decide.
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