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How Can a Person with MS Have a Negative MRI?
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How Can a Person with MS Have a Negative MRI?

HOW CAN YOU HAVE MS AND HAVE A NEGATIVE MRI?

This is a question asked over and over.  The answer is that one can have a "negative" MRI and still have a definite diagnosis of MS.  It can occur in a few different ways, each of them dealing with a different meaning of the word "Negative."  For the purposes of this discussion I am only speaking of the patient that does indeed have MS.

THE LESIONS CAN BE INVISIBLE ON THE MRI

It's important to realize that we are not saying that someone can have MS with "no lesions."  That is a contradiction in terms.  The words Multiple Sclerosis mean "multiple scars."  A scar is a lesion.   Someone who is presenting with symptoms of MS, whether they are paresthesias, weakness, vertigo, optic neuritis, bladder problems or what, has lesions in their central nervous system.  Period.  That's what causes the symptoms, the damaged nerves, the lesions.  One must not assume that lesions are only things seen on MRI.  Rather it is the areas of brain or spine tissue already lesioned that shows up on MRI.

Few articles talk about this directly, but most of them acknowledge indirectly that not all lesions, and possibly not even the majority of lesions, are yet visible on the MRI.  Autopsy examination can show lesions that the MRIs didn't show when the patient was alive.  Also, the areas damaged by MS don't show up as measurable lesions from the first minute of damage.  At some point in their development, they are invisible.  Some areas that would have been visible some time ago, no longer show up, but may not be perfectly healed and be still causing symptoms.

Lower Power MRI Machines Miss Lesions

Furthermore, we can't ignore the data from the transition between generations of MRI machines.  The old studies show that the 1T machines revealed a greater number of lesions than the machines with <1T power.  The current MRI Guidelines specify that for the purposes of diagnosis the minimum intensity of the MRI machine must be 1T.  When the 1.5T machines came out it was clear that they were superior to the lower MRIs at picking up lesions.  The new generation of machine now in fairly common use in some parts of the country is a 3T or 4T in power.  Back to back studies against the 1.5T machine show that the higher power will pick up 25% to 40% more lesions.  And, yes, the newest high-intensity MRI, like the 7T, are picking up yet more than the 3T (data from autopsy MRIs).  The 7T is not in common clinical use, but is being studied.  We can only surmise that we are still missing a certain percentage of MRI lesions.

The spinal cord is especially hard to get clear images on.  This is due to movement from breathing, pulsations of the heart and aorta, and the density of the spinal column and the body.  The higher intensity MRIs pick up a much greater number of lesions.  I had back to back spine MRIs on a 1.5T machine and a 3T machine.  The 1.5T picked up zero lesions.  The 3T picked up six (6 !!) and clinched my diagnosis.

The Wrong Technique May Miss the Lesions That Are Present

Not Using Contrast - New, actively demyelinating lesions are only shown when the MRI is done with Gadolinium contrast.  If the only lesions large enough to be seen are new and if contrast is not used, those lesions will be missed.  Many MS neuros will reject MRIs without contrast as next to useless.  However, in countries where medical resources are scarce or where equipment is carefully rationed, the use of contrast may be denied until lesions are seen.  Insurance may not allow the use of contrast until lesions are identified.  Not using contrast may miss an entire category of lesion.

Wrong Imaging Techniques - The Consortium of Multiple Sclerosis Centers issued recommendations some years ago on the techniques that should be used in looking for MS lesions.  From what we have seen on the forum, not all doctors who suspect MS are requesting this "MS Protocol" which includes 3mm slices, no skipping of areas (which is often done on other routine MRI studies) and the use of certain techniques to visualize lesions.  MRIs done outside large specialty centers may not use these techniques.  Thicker image "slices" may miss lesions.  Skipping areas of the brain may also miss lesions.

Is There Evidence That People With Negative MRI's Do Develop Clearcut MS?

Yes.  Several studies have looked at people presenting with a highly suggestive, but incomplete picture of MS, called a Clinically Isolated Syndrome or a "Monosymptomatic" attack.  They have performed MRIs of the brain and then followed these people for a length of time, usually some years, to see if they will develop full-blown MS.  It is true that the vast majority with a positive MRI will show MS.  But what about those who have a negative MRI when they entered the study? (remember they had a single neurologic attack highly suggestive of MS)  The studies show that between 2% and 10% will convert to Definite MS status during the followup.  This is very good proof that a negative MRI does not definitively rule out MS in the diagnostic process.

These numbers are in agreement with the statement by the National MS Society that 5% of people with MS have normal MRIs.  This statement is rather vague.  It does not indicate whther this means that "at some point in their disease" 1 in 20 will have a negative MRI, or if 5% will have one at the time of diagnosis.  Since, during the course of MS, one tends to acquire more lesions and loss of brain tissue, it is more likely the the 5% will occur at the beginning.  I would not take bets on my life with the odds of 1 in 20.

Are Lesions the Only Abnormality That Can Indicate MS?

No.  There is the situation that T-Lynn, here on the forum, had.  She had years of symptoms, but no "lesions" on MRI.  However, she obviously had a huge load of invisible lesions.  Her first positive MRI finding was "brain atrophy."  There had been so many "invisible lesions" that eventually large amounts of brain tissue was destroyed and it became obvious on MRI that her brain had actually shrunk.  It is not routine to do the special computer calculations that show early brain atrophy, but in her case that would have alerted her doctors much earlier to the atrophy before it became painfully obvious.

In all fairness, a doctor cannot use invisible lesions to make a diagnosis.  We can't ask them to.  But, we can ask that if a person presents with a clinical picture highly suggestive of MS, that the door to the diagnosis not be immediately and permanently slammed shut with the statement (which we have all heard) "You do not possibly have MS and will not develop it"  (Yes, doctors have said this to us)

Stay tuned

Quix
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147426_tn?1317269232
continued from first post.

THE LESIONS WERE NEVER IMAGED IN THE FIRST PLACE

In a large group of patients who present with clinical findings (history and physical) suggestive of MS, the only MRI that is ordered in of the brain. If the doctor fails to see lesions in the brain and then dismisses the patient as definitely not having MS, they are failing at their job.  If the brain MRI is negative or equivocal, and the doctor still suspects MS, an MRI of the spine should be done.  This is the recommendation of the Consortium of MS Centers.  Many clinics, though, do the spine routinely if MS is being considered. Yet over and over we have to tell people to make sure they get the spinal cord (cervical and thoracic) imaged.  A large percentage of patients will have lesions in both places. If the diagnosis can't be made from the brain alone, sometimes the information from the spine will clinch it (as it did for me.)   While only a small minority of patients will have lesions in the spinal cord only, they do exist.  The lesions can't be seen if nobody looks for them.  


THE LESIONS ARE MIS-IDENTIFIED

In this case the lesions are seen but somehow lost in the translation of the information to patient.  Basically this is a False Negative MRI.  It gets reported as "negative" to the patient.  This can happen a couple of ways.

First, the radiologist may miss the lesion(s) entirely.  (Bad! Bad, Radiologist!)  This is the radiologist's malpractice.  It won't be caught unless someone else re-examines the images.  People in all professions make mistakes.  Some are worse than others, unfortunately.  If the treating doctor does not look at the films themself, then the error will stick.  In my opinion, no neurologist who is capable of diagnosing MS would EVER just accept the radiology report as gospel.  Yet , we hear time and again that our neurologist never looked at our films.

Or, the radiologist may see the lesion and mention it in the report, but accidentally neglect to mention it in the Summary or Impression.  If the neuro of doctor only reads the Impression (this also seems to happen often), may erroneously report it to the patient as negative.  Again, this is only a problem if the neuro doesn't look at his own images.

Second, the radiologist may see the lesion and interpret it as a normal finding.  This is exactly one of the factors that delayed my diagnosis of MS for over two years.  If the neurologist agrees that the lesion is not a lesion at all and is normal for the patient, the patient will be told the MRI is negative (and I was!)  Sometimes this will be that the lesions are seen and attributed to something else, like age (even as young as 30!  Not!), high blood pressure (even though the patient didn't ever have high BP!), migraines (yes, even without a history of migraines), smoking (an overcall, smoking is only a minor factor in causing lesions), obesity (??????????), etc.  It my case the classic MS lesion was dubbed a UBO - "Unidentified Bright Object."  I was told they "happen a lot at my age."

Alternatively, the radiologist may see the lesion and report it as suspicious for MS or for a demyelinating process, and mention it in the report, but the neurologist may look at the images and completely disagree with the report.  The neuro then tells the patient that the MRI was negative.  We actually have one report of a neurologist who dismissed the radiology report without even looking at the MRI images! The patient doesn't know until they look at their records, that there was a professional diagreement as to the significance of the lesions.  I believe the patient has a right to hear the different medical opinions which appear in the medical record.

THE POSITIVE MRI BECOMES NEGATIVE BY MISTAKE

Lastly, comes the occasional mistake made by someone dictating a report, like a patient summary.  Occasionally a tired or distracted person (doctor) will mis-dictate a finding, stating something is "negative" when it was "positive."  The consulting or subsequent doctor writes that down in the patient's database and it becomes Truth.  Shame on the consulting doctor for not looking at the reports himself, but in this time-pressured world, such things happen.

HOW TO HELP MINIMIZE PROBLEMS

1) Get copies of all MRIs and the reports.  Read all the reports.  Check out anything you don't understand.

2) Request that your neurologist look at the images himself.  If he/she won't find a new one.

3)  Find a neurologist who is as interested in your case as you are.  If suspicion of MS remains after report of a negative MRI of brain and spine, make sure you are followed up at intervals.  

4) Ask about whether the MRI will be done on an MS Protocol.  If they don't know what you are talking about, get back to the ordering doctor and get it clarified.  Ask about the use of contrast.  Who has the discretion to use it?  Is the decision the neurologist's or the radiologist?

5) The spinal cord should be imaged on the highest MRI intensity available.  3T is definitely better than 1.5T.  Any is better than none at all.

6) Get copies of your medical records and read them for mistakes, inconsistencies or things that do not match what you are told.

Finally, I do not mean to suggest that all people with a negative MRI have had things missed.  I am merely describing the ways in which a patient who does have MS can erroneously believe they have a negative MRI.  In reality, a negative MRI does lower the chances that a person will have MS, but it does not reduce that chance to zero.

Quixotic1

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393986_tn?1303829575
Way to go Quix!  I always look forward to your posts and the insight they bring to me.  They always answer my questions, Thank You!

Many Hugs to Ya,

Spastic Ada
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Avatar_f_tn
Wow!  I'm amazed at how many of these things are so very true pertaining to my NON-diagnosis.....I've heard the smoking thing, the 'age' thing....etc.....
On my MRI report, the radiologist clearly states the MS issue and I have a ton of 'clinical' symptoms.....but he still won't commit....
Also, on my brain MRI it states that "there are definitely greater than 10 T2 signal abnormalities...." etc.....I asked my Neuro how many does 'greater than 10' mean?  He says, you have about 30!!!!!!  
Wish I could show you the pics...
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Avatar_f_tn
Actually, I probably can show you the pics....How do I put them on here....???

Sorry, my brain is *&(^%$##!!!
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147426_tn?1317269232
I don't know how to post pictures here.  I do know they are reviewed by MedHelp and won't appear for a while.  I'd offer to look, but I know nothing about reading MRIs.

Quix
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Avatar_f_tn
Thanks, Quix I have had so problems posting!!! I had a big long note for ya and

POSTING PROBLEMS!!!   I WILL BE BACK LATE NIGHT!!!  BRAIN FREEZZZZZ PROBLEMS

DENISE
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Avatar_f_tn
Hi Quix, thanks for the good infomation much unable to understand but what did catch my eye was the brain SHRUNK!!!! my mri findings: states brain volume is somewhat decreased given age!!! so does this sound the same??? I thank it does!!

also conclusion: is moderate cerebral white matter disease which is non specific with regard to etiology.  ms has not been ruled out!!! i have had so many tests.

for over a month i have been having a stinging blister feels like my skin is peeling away from my skin and creepee cralers on my skin and also zaps digeee pains the hot shower and stress brings it on, when i work out i have to be extra carefull my body dont get to hot!!! and of corse hot sun same thing!!!  o my the first time i had problems with the sun i was laying out and my arms got heavy numb STINGING BODY,  and I RAN IN THE HOUSE AND GOT IN THE SHOWER!!   this is so very weiord stuff !!!    i relly need this mri with contrast. I

told my nero I want to now whats wrong with me before i die!!!! and thAT Iam getting numb er and dumber!!!  he look at me funny!! my spine has been feeling sore alot!! up my spine feels sore!!!

thanks for all your help talk latter

Denise
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333672_tn?1273796389
Quix: Thanks for yet another thorough, informative post!

I will second Quix's recommendation to get copies of your reports and also to make sure the neuro looks at the pics. When I had a brain MRI last fall, I was relieved that the report came back normal. When I had my follow-up MRI this month, I was distressed to read about 4+ lesions and not sure if they were new or just because I went to a better MRI (closed instead of open). When the neuro looked at the two sets of pics, he said the spots were there all along and that the first radiologist must have been blind. So this kind of mix-up definitely can happen.
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147426_tn?1317269232
A little background info here.  People's brains do often shrink progressively with age.  When they studied this with sophisticated MRI quantitative measurements they can demonstrate that brain atrophy (shrinking from loss of tissue) begins occurring at about 40 years of age.  But, it should be noted that "visible atrophy" does not occur until much later in life.  

So when a radiologist is looking at an MRI from somebody 70 years old or so, they will often see some atrophy and recognize it as "normal for age."  Nobody less than 50or so should have obvious brain atrophy on the basis of age.  So - your MRI report that states the loss of brain volume is more than can be accounted for by age.  This is a significant implication about some disease process that is likely occurring and destroying brain cells.  What does your neuro say about this?

This is an abnormal MRI - whether distinct lesions are seen or not!  

You are describing the "heat intolerance" such as is seen in MS very well.  Have you told your neuro about this?  

Also, feel free to ask me what you didn't understand.  I don't always write clearly.

Quix
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Avatar_f_tn
Hi Quix,

I was born premature back in 61 weighing 4.5 pounds. could of this made my brain volume decreased ??  I do belive there is more then one problem going on !!

the neuros do not say much, the one told me when i told him i was haveing blureery vison that it was not a sigh of ms, and loseing your  vison was!!! That was enough bull i could stand for him in one day!! so i keep my mouth shut he was the one that wont do a mri with contrast.  the other neuro just shakes his head and looks at his computer!!!

when i asked him what the mri ment , i said it to him like oooo do i need to make a apointment to talk to the readogest!! becouse do you no how to read this!!!  and he said no!!!  iam going to be wrighting a long e-mail  to these providers, starting from the begining of my life and pushing for answers.

I NEED TO NO FOR MYSELF. the heat intolerance , does it happen with other medical problems? i have a 12mm white matter lesion in the right lateral ventricles!! and on the posterior right frontal lobe a 7mm lesion is this to large for ms?  I will talk latter!!  I have lots more Thanks lots

Denise
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Avatar_f_tn
Hi Quix,
I was ready to give up until I read your post. My symptoms include complete bladder and fecal loss twice back in sept.Tingling in feet when standing or walking. Tingling in both hands.BUE and BLE muscle spasms and cramps. L'hermittes sign on back and back of right calf. MRI on 1.5 showed no lesions, but according to radiologist report severe cervical and lumbar spinal stenosis which my primary says would explain all my symptoms except for the severe itching on antecubital areas of both arms that comes and goes. But my neuro looked at the mri images and said no problem in my cervical spine so he cant explain my ue symptoms, but decided an LP was not neccesary. I asked him about a 3T MRI vs. 1.5 and he admitted sometimes 3T will pick up what 1.5 misses, but then stated that I do not have MS and they will start me on PT for Lumbar spinal stenosis and dismissed UE sx. So I took the MRI cd to the hospital where I work and a radiologist that specializes in neuro read for me. He said my cervical spine looks maybe mild to moderate and my lumbar spine would hardly be worth mentioning! So, 3 different opinions on the exact same images! My feeling is that unless MS is definitively ruled out, my dr's are failing me. But I was ready to give up. Thanks to you, I will seek a 2nd opinion thru a MS clinic, get his opinion on spinal stenosis vs MS. All symptoms must have an answer, not half. Again, thank you.
SamsGam
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413836_tn?1206468712
Hi Quix

Your posts on this thread should be put on the health pages,
I see this question non stop, on posts here.
its great understandable info. and could only add to the quality
of your other articels there.

Bravo Quix.                                                           Gollie


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Avatar_f_tn
It has been one year since my first and only "attack." I see an MS doctor for follow-up, but I have not yet been diagnosed with MS, because the AMA recommends two lesions for diagnosis. So, I am in the "Clinically Isolated Demylinating Syndrome" category right now. What is the chance I have MS?
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147426_tn?1317269232
Hi, I'm bumping this up for you.
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bump
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Avatar_n_tn
i am new to this whole thing...no dx of ms but have had symptoms for 3yrs + now....started with not being able to walk after argument w/hubby...went to 5 emergency rooms that week and noone could tell me anything. symptoms seemed to have subside but still have "flares", especially in extreme humidity/heat. been known to gain up to 4 pounds in a day. been known to go 12 or more hours without urinating, dont sweat normally, loss of hair on head, legs, and pubic region, memory "fog", recently dx legally blind due to peripheral loss, neuropathy of legs, sorry list can go on forever. have had an mri done with and w/out contrast....dr say it negative. just getting frustrated here, even my hubby is becoming frustrated. have read that a traumatic event can precipitate ms symptoms, if this is true....that might explain some of it.
again thank you for letting me rant....any assistance/guidance would be greatly appreciated.
tina
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