Thursday, October 23, 2014

Sunday, February 22, 2009 tpwoods, Community Member, asks

Q: Do MS patients always have lesions on an MRI?

Do MS patients always have lesions on an MRI?

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Answers (9)
Merely Me, Health Guide
2/22/09 9:52pm

Hello

 

This is a tricky question to answer.  Know that I am not a doctor....I am just another MS patient.

 

But I will tell you my history as briefly as I can.

 

Over ten years ago...when I was in my early thirties...I experienced a bout of optic neuritis.  My vision narrowed, colors became dim, and I had a blind spot.  I went to see the doctor who was worried that I had a stroke or a brain tumor or MS.  So...I had an MRI at that time.  It came back normal...no lesions. 

 

Fast forward to more then ten years later.  In October of 2007 I was diagnosed with MS and then I had multiple lesions. 

 

So...did I have MS way back when I had no lesions?  I don't know if I can answer that.  But now I do.

 

This is why they do other tests sometimes like the spinal tap or evoked potentials. 

 

But honestly...the MRI is one of the best tests to help diagnose Multiple Sclerosis.

 

Thank you for your question.

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Lisa Emrich, Health Guide
2/22/09 10:15pm

Hi again,

 

MRI is one of the best tools used to gather evidence to make a diagnosis of Multiple Sclerosis.  Just like Merely Me's story, I had optic neuritis years before my MS diagnosis.  At that time, definite inflammation was seen but no demyelination (which is what causes our lesions.)  See Beginner's Guide to MS: What is a Lesion?

 

Making a diagnosis of MS can be tricky and it truly depends upon the evidence (or lack of evidence) and the clinical signs of MS.  The current criteria used to diagnose MS incorporate the use of MRIs to make an earlier diagnosis possible.  See By What Criteria Were You Diagnosed with Multiple Sclerosis? and be sure to read Julie's comment.

 

As for me, my lesions have all been in my cervical spine.  At diagnosis, I still did not have brain lesions.  I hope that your neurologist had ordered an MRI with and without contrast for both your brain and neck at least.

 

Imagine just 30 years ago, there was no MRI testing and a diagnosis of MS came from observing clinical symptoms and eliminating other possibilities.  It was truly a wait-and-see game.

 

Here is what the National MS Society says about diagnosing MS without the presence of lesions....

 

"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 at the time of diagnosis. 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."

 

When searching for a diagnosis, it can be frustrating to not get answers or even to not have a name for something which we know is going on inside our bodies.  Keep working with your physician and always be willing to get a second opinion.

 

Be well and let us know how you're doing.  Lots of good folks here.

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Joann728, Community Member
3/ 3/10 10:12pm

I have been waiting for a diagnose since July, I have been experiencing numbness and tingling, I lost my eye sight for the second time in July, I have been getting worse everyday, both hands went totally numb for about 3 days, I suffer with fatigue, and mucsle stiffness, I have been to every doctor there is, my MRI was negative, my Lumbar puncture and MS profile was postitve, but the neurologist, don't believe that you can have a negative MRI.  I'm am been sent to a MS specialist now, but really nerves about going to them.  This has been life changing for me, no the doctor told me I have something for sure he just don't know what it is.  I am turning 50 years old this year, I would love some answers quickly, so I can get my life back.  I can barely walk at the end of the day.  When do you give up on a diagnose?

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Lisa Emrich, Health Guide
3/ 5/10 9:07pm

Waiting for a diagnosis can be frustrating.  I'm sorry that you are going through this right now.  But the good news is that you are seeing an MS specialist soon. Try not to be nervous.  Take all of your information with you and just be honest about your symptoms.  Let us know how it goes.

 

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ERD, Community Member
3/11/11 8:55pm

Hi. I wonder when you say you have no lesions if you have had both an MRI of the brain and of the cervical spine?  I was recently diagnosed with MS at 52 years of age.  I am dragging my right leg and by the end of the day I am really exhausted and I don't have tingling but rather sometimes from my breasts down I feel as though I am asleep.  It has been life changing for me as well, but it is not the worst diagnosis one can receive.  Do you live where lyme disease is a problem?

Just a thought.  Best of luck to you. Truly.

 

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Willneverknow, Community Member
5/ 3/11 2:53am
I just want to say I know how you feel. I have never found a helpful doctor that actually cares. If it is not spot on the just don't look outside the box yet we read about all the exceptions. At times it feels that I have to first die before any doctor would care enough to even wonder what is wrong. I am an attorney and when I come across a problem I research and continue until I find answers but doctors simply don't care Reply
Peg, Community Member
8/ 8/11 11:27pm

Hello ~ I'm sorry to hear about your difficulty in getting an answer but whatever you do - pursue...PURSUE.  Don't be nervous, be proactive with your health.  I am not a Dr. but I DO have MS.  My neurologist thought it was a possibility and suggested a spinal tap but told me it was 50/50 on accuracy so I had an MRI, with lesions present.  He suggested at the time I may have MS however, he could not diagnose because the symptoms/occurrences must be at least 30 days apart or something like that so he recommended I start taking injections!  I don't even like to take aspirin so I opted not to.  So he warned me about losing control, losing balance or loss of use with a limb or temporary blindness which really scared me!  I left choosing to live better and NOT worry.  Years later, a relapse, numb up to my sternum, another MRI, and more lesions, thus a diagnosis, thus a wheel chair for a few days.  I see you have some of the classic symptoms.  Keep a LOG of every symptom, every day so you can take it to your Dr. or even a second opinion and request a copy of your MRI scan.  My neurologist put it on a DVD for my file.  What ever you do PURSUE.  If you have MS, you need to get medication so you can LIVE WELL.  There are many ways to get help too.  If you are diagnosed with MS, be sure to contact MS registrys and resources for assistance.  One other thing, Once I knew I had it, it was too late for a research study.  When you have it, you have it.  So if you get the runaround, you can at least inquire about MS research studies and perhaps they could get you on some medication until you get a diagnosis, for whatever it is.

  Good luck and God bless.

 

 

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Kim franco, Community Member
10/23/12 1:12pm
I am going thru the same thing you are. I am extremely aggravated sitting here in my hospital bed. I too have list my sight twice and have been hospitalized 9 times in the past two years fr being numb tungly n paralyzed. Even my eyes being non reactive. I have had all negative MRI's. but one inconclusive spinal tap showing one n a half rings an I do have lesions on my spine. But are still not treating me. Instead when I have a flare they are giving me 1000mg of solamedrol a night for three nights. Of course that reduces the swelling tingly weakness an I am able to walk again. I am at my wits end can some one please tell me where to look for answers. I also am diabetic have fibro n degenerative disk disease. Please help. My email is bobnkim83@me.com Reply
peter1991, Community Member
6/12/14 10:53am

you can have ms without brain lesions my are at my c4 c5 in neck. I get jaw numness on and off,numness both are hands  arms, since 1991,never put on meds. because it never affected my sight or walking. I leave in Fl. but my doctor is in new york, most guess, he is the best on east coast.[ patchouge ny route 112.] nero.assoc.

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beau31958, Community Member
2/23/09 2:14pm

HI there, evventually youwill, howeever it took three MRIs before lesions showed up on mine. Apparently, MS will start to cause damage before it shows on the MRI - which was the case for me....

 

Gary

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cz1970, Community Member
3/10/09 12:18pm

I was diagnosed with MS even after 2 negative MRI's of brain and C-spine. My symptoms started with Optic Neuritis then within a year I had 2 episodes of right sided weakness, drop foot, parasthesia's etc. that required steroid therapy. After the steroids my symptoms dramatically improved over the month. Because of 3 total attacks my Dr diagnosed me with MS and put me on meds. So, yes I believe that you can have MS with a negative MRI. I just wonder if I will ever show lesions?

 

 

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Meredith, Community Member
10/11/10 6:53pm

This is somewhat nice to hear. My symptoms read very similar to yours, however, my physician and neurologist have two very different opinions. My physician says yes to MS with a negative MRI, the neurologist, I'm pretty sure, thinks I'm crazy because usually I am very symptom free when I see him. He is over 200 hundred miles away and often takes months to get an appontment. ( I live in very small town Montana). i am currently finishing up steroid therpy for left sided weakness, and it is helping. Still using a cane, but the wheelchair is now gone. any suggestions on conveying the symptoms to my neurologist so that maybe he will order some further more definite testing? thanks, you guys re great! this site is awesome.

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cz1970, Community Member
10/19/10 11:25am

Hi there again :)

 

What I did was make a detailed time line. For example I wrote 8-15-09 Optic Neuritis. Then gave a brief explanation of what symptoms occurred and how long it lasted. If I was treated, what was I treated with.  When you do this you will show periods of flares and where the symptoms hit and how long it lasted. MS is classically flaring then remitting. You can ask for an LP (lumbar puncture). You can have your MD run a series of blood tests that are normally checked by the Neurologist to rule out other diseases that could explain your symptoms such as: ANA, Lymes Disease panel, Lupus Panel etc. These are typical to be drawn. An LP is important to check because some people are only diagnosed that way. For me... All tests negative. My diagnosis came from my time line and specific confirmed symptoms like 2 bouts of Optic Neuritis etc.  GOOD LUCK!

 

cz

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LMT, Community Member
1/14/12 9:06pm

This is all so similar to my experience. So frustrating. Does anyone know of DR who has made a diagnosis with no lesions? I have seen four Dr and they have not heard of MS without lesions. Sigh.....

Thank you for any input you may have! 

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Christene1, Community Member
3/20/09 11:36am

I do beleive that they do.  When I was first diagnoised they did my MRI and I also had the lesions on my brain, I would say yes.

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mom2, Community Member
5/ 7/09 11:22pm

HELLO all-

 

No they dont, but probably will eventually show up. I have a neg MRI, neg LP and have a partially positive Lyme WB. Imagine that? Think it's confusing just trying to diagnose this parasthesia, fatigue and speech issue? I am in search of a well trained non biased provider who can look with a wide angle lens and provide solid answers.

 

41, mom of two from NJ

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paj200, Community Member
1/23/13 3:48am

I have been struggling with MS symptoms for about 9 years after a massive attack that put me out for three weeks, couldn’t walk unattended for over two months, had split double vision, numbness, tingling, extreme vertigo, total balance failure, reverse sensation, altered perception, spasms, ect
It left me with many symptom that I fight with every day, spasm, involuntary movement of limbs, brain fog, blurred vision, tingling, numbness, trouble with balance and coordination, memory problems. I have had three MRI scans that showed no lesions’ but I have failed two EP tests, I have asked for an MRI scan with contrast more than once’ but the consultants are reluctant to do this!!
Yet tests done in the states prove that up to 60% of lesions are not found without contrast!! I sometimes get the impression that they don’t want to find the truth behind the symptoms, it would be interesting to hear of other that have been treated in this manner. I have now been diagnose with Functional Neurological Disorder (FND), What’s this when it’s at home? If you read all the info about this condition it becomes simple’ it’s all in my head! What rubbish.
I think this is a massive cop out because they don’t know, or maybe there just waiting for me to have another massive relapse like the first one!!

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ctrombetti, Community Member
3/31/13 4:55pm

i am a 29 year old female and at age 22 had nystagmus in one eye for 3 weeks ive had a couple bouts of right sided facial numbness in which was given oral steroids and went away over night but have pain in head neck and right arm almost constant i had an mri of brain only showing white matter lesions in which i was referred to two nuerologist who ran no other tests besides a eye test ? i was never diagnosef with anything judt left with no answers or explanation they said i did not have any nuerological symptoms for dx of ms. i had ana panel on blood came back normal i cant help but think i have ms because i have btain lesions and im scared does something bad have to happen before they help u ? i feel like they think im crazy .

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Confused in NC, Community Member
5/14/13 11:07am

I started having multiple MS symptoms in Jan.2013.  I went to the hospital and was told by the E.R. doctor that I may be having mini strokes or I had MS.  The following day the smurky Neuro doctor told me I was "too old" to have MS (I'm 49).  He ordered an MRI of my brain - it was neg.  He did NOTHING for me... NOTHING!

My family doctor referred me to a local Neuro doctor, where it took me 3 months to get in.  Although he too has suggested my symptoms are due to anxiety, he was kind enough to order an MRI of my C-spine - it was neg as well.  He also ordered all necessary labs to rule out other possibilities, such as lymes disease, lupus, etc. (Some labs are still pending).  There are a couple of symptoms that have lasted while others have recently disappeared, such as head bobbing and memory problems.  He gave me a med to help with the head bobbing, which it has helped, but maybe the dosage needs to be increased to make it completely go away.

I'd like to list my symptoms to see if anyone else has experienced the same.  Even if you've gotten a diagnosis other than MS I'd like to hear from you.

  

*Confusion  *Memory Problems   *Tingling & Numbness leg, arm, hand  *gated walk    *blurred vision eye   *trunk of body and/or head sways back & forth   *stumbling   *hoarseness that comes and goes

 

     

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By tpwoods, Community Member— Last Modified: 06/12/14, First Published: 02/22/09