Can You Can Have MS without MRI Lesions?

[Quixotic1]

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

[Hope38]

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

[Quixotic1]

Not to my knowledge.  I've never heard of it.  Quix

[Hope38]

Thanks it was worth a shot to figure out what those pesky little things are doing on my frontal lobe.

Thanks :)
Lisa

[T-lynn]

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.

[Patti66]

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.

[pietiangel]

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?

[Heather3418]

bumping up for the newcomers

[kinkin44]

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.

[kinkin44]

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.

[gjo]

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

[jensequitur]

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.

[Treechris]

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.

[essdipity]

Hey, Treechris! Welcome to the forum. I'd like to ask a favor: Would you post your own story in a new thread? We'd like to hear more about you, and I think your story will indeed help others. I'm so glad I didn't "wait and see."

ess

[Rena705]

Hi Chris and Welcome to our forum!  I am especially interested in what happened in your case because I have been denied the DMD's even though I have been diagnosed with MS because my neuro doesn't believe that it is active!  She can't come up with any other diagnosis for my chronic pain but says I am in remission.  Maybe I should be looking for another MS doctor but this is the second one and while the first said on a few occassions when I asked what the problem was "it's underlying symptoms of your MS" the second doctor is adamant even though I have clear lesions on MRI and Oligloconal banding on my LP back in 1993.  My latest MRI was in November and I was told that the lesions are indicative of MS but go get a second opinion (by my first doctor).

So you see...I would be VERY interested in your story and would appreciate it if you would consider sharing!

Lots of Hugs,

Rena

[anamaria73]

My GP told me I have MS after an MRI showed lesions.  Just today my neurologist told me that he doesn't think I have MS because the lesions could be just normal aging.  I'm 34.  I've had progressively worsening joint pain for 17 years, and one recent 3 month long attack of dizziness weakness and what seemed like dementia or Ahlzheimers!

  I thought that oligoclonal bands were a definite sign of MS??

That's why my neuro says he doesn't think I have it.  I hope that you can get the treatment you need, Rena.  It sounds like you could use a second opinion on your second opinion.

[Treechris]

Sure, I'll post my story on a separate thread.  

[Hallie610]

Hi to all that are reading. I was just hopeing that some one can tell me some of the symptoms of Ms. I was in the hospital due to stroke like symptoms spend a few days there and had many heart test done, come to find out that I did not have a stroke , well that's a good thing I thought. And then a Neuro came in to see me, and told me that on my MRI he had seen somethings that he was not happy with, He said I think you might have Ms, and that he wanted to do a few more test. So on the 28th of April I have to go for another MRI of the brain, neck and my spine. I am just hopeing that one of you can help me with some  symptoms you might have. I had numbness on the right side of my face, and weakness on my right side weakness in my arm and legs, I was really dizzy, just felt like i was drunk, and now that I am home I sometimes get this feeling in my leg like I can't move it like it is heavy. Does anyone get things like this happening? And it's really weird to cause the Neuro said that what he was seening on the MRI was all on the right side of my brain. Well hopeing to hear from someone..

[Quixotic1]

Hi, Welcome to the forum.  I hope we can help you find some answers and meet others who have gone through exactly what you are going through now.  I am Quix.  I am a retired doctor with MS and I am one of the Community Leaders on this forum.  I try to help people get the information they need.  

The symptoms you had certainly sounded like a stroke, so I'm glad they could determine that you didn't have one.  Yes, MS can show up with sudden weakness just on one side - almost exactly like a stroke.  I have weakness on my right side also.  It started one morning when I suddenly couldn't lift my foot to put it on my left knee to put my sock on.  That was about three years ago.  Last fall I began having weakness in my right arm.  My leg also feels heavy, like I have to drag it forward to walk.

The dizziness is also extremely common in MS, though it happens for other reasons, too.

I'm sure it seems like a long time to April 28th for the full MRI series.  When the neurologist looked at the MRI of your brain he must have seen some lesion (spots) that made him concerned about MS.  In MS, you can't predict from the side or location that the lesions show up on the MRI where the symptoms will be.  In people with MS there are felt to be many lesions that are too small to show up on the MRI, but that still cause symptoms.  Also, lesions from MS in the spinal cord can cause a lot of symptoms.

It is hard to talk about all the things that MS causes.  A few of the common ones are bad fatigue that is worse that the other times in your life that you have been really tired.  It's fatigue that doesn't get much better with sleep.  Another problem which is common is to feel bad and tired in the heat.  Some people state that they get weaker after a hot shower or with exercising, or on hot days or when the furnace is up too high.

I am going to ask you to do a couple of things.  The first is that no one will find you under this old discussion.  So, if you would click on the "Return to Forum" at the top or bottom of this page, then create a new thread, by clicking on "Post a Question" you will have a whole discussion area where you can tell us all about yourself, how old you are, and stuff.  Tell us all your symptoms if you want (we LOVE information).  Ask any questions and people will be by to say hi and share their stories.

Also, at the upper right hand of any page is a list of things you can click on.  One of these is "Health Pages."  If you click on that, there are some essays about MS and MRIs you might want to read.

We all know that this is a scary time for anyone and it's a time when you have a thousand questions.  That's why we're here.  Also, we have members from all over the world, so there is almost always someone around to talk to.  MS is NOT a fatal illness.  And only about 25% or so will end up in a wheelchair.  Many people think that MS is always severe and will cripple you.  This is not the case, and many people continue to live pretty normal lives except when they have attacks.  There are also medicines which can help slow down the brain damage, so try not to be too worried (I know, what an impossible thing to ask!!).

Welcome again, and I hope we see you really soon on the main page of the forum so we all can meet you.

Quix

[barbie4311]

I have a VERY complex case. I am a 53 year old female. I do have demylinating lesions in the spinal cord. I have moderate to severe cervical stenosis, reversal of the cervical cord, a large VM in the cervical spine (been studied to death), larnygeal reflux, urinary spasms/urgency, migraines, rotary nystagmus, now horizontal nystagmus, dizziness, orthostatic hypotention--was mixed with hypertention--they said baroreceptor dysfunction made worse by whiplash car accident, arm and leg pain---worse at night--stiffness primarily. Also, high estradiol with ovarian solid well-circumscribed mas on right ovary vs. a complex cyst---menopause twice. Oncologist is not thinking that the mass is malignant--watching it closely, however.He thinks it's a corpus luteum cyst possibly. If it grows anymore, it will come out. But, anethesia is a concern with my autonomic dysfunction. Main question---what about the demylelinating lesions ONLY in cervical cord??? Can this be MS???

[Quixotic1]

Have you posted with us before?  We have had a couple Barbie's.  If not, would you repost this to the main page.  You bring up some important things and we have other people with similar problems.

My answer is that "Yes," it is my understand that with significant cervical spine disease - meaning the bony spine and discs - you can have lesions.  If the spinal cord is compressed, twisted or otherwise pressed on, small blood vessels may become cut-off or torn.  This can cause death to areas "within" the cord and cause lesions which may look identical to MS lesions.  This disorder is called Cervical Spondylotic Myelopathy - which means desease of the spinal cord itself caused by mechanical pressures and effects from the bony spine and discs.

It would seem to me  - note that this is not my area of expertise - that it is more likely that you have the cervical lesions from the local problems in the area than from MS.  Please do not take this as an informed opinion.  But CSM can cause these lesions and they do "mimic" MS.

I hope to see your post on the main page.

Quix

[kissimmeethomas]

Please help..going nuts here... long story short is..I have many many symptoms of MS and would like to know if anyone can understand my MRI findings.. it says
THERE ARE SEVERAL NONSPECIFIC PATCH T2 HYPERINTENSITIES NOTED THROUGHOUT THE SUBCORTICAL WHITE MATTER, CENTRUM SEMIOVALE, CORONA RADIATA AND THE PERIVENTRICULAR WHITE MATTER WITH THE LARGEST NOTED AT THE RIGHT FRONTAL PERIVENTRICULAR WHITE MATER MEASURING 1MILLIMETER.  THESE ARE NONSPECIFIC AND NONENHANCING. POSTCONTRAT IMAGES DEMONSTRATE NO EVIDENCE OF ABNORMAL PARENCHYMAL OR MENINGEAL ENHANCING PATTERN.
MILD DEGREE THOUGH NONSPECIFIC PATCHY T2 HYPERINTENSITIES INVOLVING THE CEREBRAL WHITE MATTER WITH THE LARGEST NOTED AT THE RIGHT FRONTAL PERIVENTRICULAR WHITE MATTER.  NONENHANCING AND NONSPECIFIC AND CAN BE SEEN IN DEMYELINATION PROCESS.  SEQUELAE OF MIGRAINE HEADACHES MAY HAVE A SIMILAR APPEARANCE CHRONIC SMALL VESSEL.  ISCHEMIC CHANGES MAY HAVE SIMILAR APPEARANCE AS WELL.  CLINICALLY CORRELATE.

I HAVE BEEN GOING NUTS WITH MY NEUROLOGIST TELLING ME ...MIGRANES ETC.. I DON'T HAVE HEADACHES... HAD A ATTACK ABOUT 1 MONTH AGO THAT RESEMBLED A STROKE.. VERY BAD.. AND NOW I'VE BEEN SLURRING..FACE PAIN.......I'M SORRY THIS IS SO LONG.. JUST NEED TO KNOW IF THIS IS ANY POSSIBLE INDICATOR FOR MS LEASIONS.
ANY HELP IS APPRECIATED..
THANKS
DAWN

[momstired]

  I am 41 years old and 16 years ago had my first of many MRIs for sx that my PCP was sure were MS. the MRI showed no lesions and I got better well sort of, I modified my lifestyle- I had been coaching figure skating and then overnight lost my balance. I increased my desk job hours and stopped skating. A few years later I had my first child- I then lost feeling in my left hand and the top of my leg. I became very weak and was unable to walk to any extent. I would lay in bed- wide awake and not move for hours so that I could do normal activities. I went to see an neurologist and he ruled out myathenia gravis.he did a lp and I had 3 emgs. they were unconclusive and he said i had "probable MS" I had intermittant weird stabbing nerve pain which was not predictable. then- I got pregnant with child number 2- at the beginning, i could not even go to the grocery store because I was so weak, my left leg felt like lead...but by the end of the 9 months I was fine again. for years I was fine- I had 2 more kids(yes 4!) and was ok until 11/2 yr ago I lost again lost strength and muscle tone on my left side. I also have  had some other bizzare things occur- never able to find out what it was...and a busy mom and medical professional- I didnt look to hard. 21/2 months ago I lost all strength ( on my left side again) I had bizzare face pain and my left leg seems to have charley horses all the time. this past weekend i was feeling better- had had another negetive mri and bam...I guess I overdid it teaching 4 yr old sunday school because I could not use my left leg again. I got myself home and decided I need to figure this out. I have had many MRIs all without sign of lesion. I have read that 5% of folks w/MS do not have lesions--does anyone know what they look for. my reading has led me to believe that it is clinical sx- I wonder what I should do now...denial has not made this go away I am sad to say

[jensequitur]

Ack!  Page breaks!  That's just a block of squiggly lines right now...

[sllowe]

Bump. . .