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The Dreaded Normal MRI Results

  • By bifflez

    The very first MRI I had back in 2009, when my symptoms began, was examined by a neurologist, which he found a “small, nonspecific lesion” and mentioned I should keep a watch on it with future MRIs. My symptoms then started as left-sided, mild hemiparesis and left unilateral paresthesia. I noticed it in my left thigh, and it gradually radiated down to my left leg and up my back to the left arm. Of course, at the time like many others with unilateral hemiparesis/paresthesia, I thought I was having a stroke. The constant “buzz” and weakness persist for several days before dying out and transitioning to a chronic but transient reoccurance of the same symptoms, but albeit very faint in comparison to the episode that lasted several days. This transient buzzing has never stopped since.

    One later in 2010, I experience what I believe was the Lhermitte’s Sign. I was talking to a customer and leaned my head to the right, about 45 degrees, which then triggered a painful electrical shock jolting down my neck and right side. My grimacing and wincing response to the pain was outwardly noticeable, as the customer asked if I was all right. I told them I was fine, of course, even though my neck and side was burning with the aftershock of the jolt. This carries on for about a year every time I tilt my neck in that same position.

    Then, two months ago was the doozy. 6 years after my first episode, I experience what I believe is my second full-blown episode. At first, I believed it was a migraine aura with the whole nausea, faint spots in front of the eyes but not enough to cloud vision entirely, and a tension headache. This builds for an hour until I’m released from class and drive home. As soon as I get in the house the spots get bigger and explode into white. They are becoming so opaque, big, and numerous, that I cannot even see to read my textbook. This continues for an hour before my left side explodes and lights up. This is no longer the ignorable and tolerance faint, transient buzzing. The intensity of the paresthesia has increased to a painful level, and I now begin to notice a clear division between my flaming, electric left side and my normal, unaffected right side — from my scalp to my toes. Realizing that this was no migraine and that it was episode number 2, I begin to write every symptom thereafter.

    As this is already lengthy, I’ll sum that symptom list up. The next day, the total numbness and weakness kicked it. It affects my walking so much I end up with shin splints in my lower left leg within two days. The total numbness and weakness last for two days, and it transitions back into more of the paresthesia. Although every area of my left side was fair game, it kinda came and went like Christmas tree lights set on blink so that a group of lights light up, then fade, then another group lights up, then fades, and so on — several localized areas of my skin “light up” then fade as other areas begin to “light up” and fade just the same. I actually kinda thought this part was pretty interesting and cool, hah! Then after a day of Christmas tree paresthesia, it fades into similar normal transient buzz, but with greater intensity this time — more on pair with the intensity of the first episode.

    And that’s kind of my story. I had a second MRI a year after my first episode, which the radiologist and my primary said was normal. When I told him about the lesion that the neurologist found, he said he didn’t see it. I just had my third MRI done last week, of course because of this 2nd episode, and it was normal as well. I’m still waiting on an appointment with my new primary to cover the specifics, but I can’t help to feel extremely deflated and disappointed at this time, and I’m just so very confused as well. I’m currently in nursing school with a year and a half left, so this second episode is just very inopportune. I had to remediate and come back to perform hands-on skills that I just couldn’t do the first time because my left hand was locking up and the paresthesia flared up so bad that I couldn’t concentrate. I scrawled like a baby to the instructor that day. The whole ordeal was just overwhelmingly mortifying.

    I just dunno where to go from here, and I feel like a hypochondriac talking to most everyone else. The neurologist who found the first lesion is no longer in practice anymore, so it makes things harder surrounding the elusive “small, nonspecific lesion” that no one else seems to find. I think I’m just in need of moral support right now from those that understand, because I’m feeling so defeated and have no idea what direction to take from here. ;{

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  • By Lisa Emrich Moderator

    Hi bifflez,

    It sounds like you’ve had a long journey to this point already. I’m sorry that your original neurologist is no longer practicing and that current doctors are reluctant to diagnose because of what your MRI shows or doesn’t show.

    If you haven’t consulted a neurologist who specializes in MS, I recommend that you seek on out. You can search for an MS-specialist or MS clinic on the Consortium of MS Centers’ website.

    On a personal note, all of my lesions have been in my cervical spine and my brain remains clear of lesions after having been diagnosed with MS for 10 years.

    Good luck,
    Lisa

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  • By levimosa

    Hi,

    Any update?

    Your story is very similar to mine…. I found this post because I too feel almost helpless.

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  • By MJRmsWARRIOR

    Always get a 3T MRI done, it’s a stronger MRI that shows more lesions. That’s how I finally got diagnosed with MS, despite having 2 prior brain MRI’s done years earlier with the weaker MRI machines. Don’t even mess with those weaker MRI machines. The 3T MRI showed that my brain had MANY lesions. Always also get both a brain AND a cervical spine MRI. Sometimes the Doctors only want to do the brain MRI, but INSIST on both!

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  • By kjmac

    Hi Bifflez,

    I’m sorry you are having trouble with MRI’s! My lesions were written off as headaches or age, not the real problem. The small punctate lesions in the deep white matter of the frontal lobes, a bigger lesion further back and occipital lobe lesions. My eyes look perfect and my vision sucks, looks like I’m in a swimming pool looking under water! Through a broken window or dot to dot! I had to go to Issaquah for a second opinion and that got my dx. It took a long time because my normal LP read by an incompetent neuro had a protein level of 77. Field of vision was abnormal, lesion on my thoracic that was seen in 1992 was seen by my specialist in 2012 but the team went to the radiologist and he said artifact
    But my neuro said it was a lesion but got overruled. Hang in their, lesions will show up!

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    • By tenyatallon

      What is an LP. I’m thinking some kind of blood count, but not sure what

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    • By TasMS

      LP = Lumbar Puncture.
      You curl up in to a ball and a needle is inserted in to your spinal column between two vertebrae to extract cerebrospinal fluid (the fluid that runs between brain and spine). This is tested for Protein and “o bands”.

      I have refused this procedure because:
      1) I cant roll in to a ball
      2) It is invasive and runs the risk of damaging spinal nerves.
      3) It is also non-specific so a “positive” result for o-bands does not rule MS in and a “negative” result also doesn’t rule it out.

      So if a test is not going to modify treatment, and will not provide a diagnosis, the risk is higher than the benefit and I won’t do it.

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    • By alulu

      What doctor in Issaquah finally helped you with a diagnosis? I live in the Issaquah area and am looking for help getting a diagnosis. Thanks!

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    • By frustrated1971

      I am having the same problem. My LP was fine. My proteins are fine. However; my brain MRI looks like a poke a dot mess or swiss cheese. I just had a cervical mri yesterday. The doctors are wanting to dismiss MS just because of my LP. I have had problems for well over 20 years. This is the first time that everything makes sense. Not wishing for MS, but at the same time, it makes sense. Frustrated and confused. I don’t know what to do.

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    • By Donna Steigleder Moderator

      If you are not seeing a doctor who specializes in multiple sclerosis, you may want to get a second opinion. Sometimes those who do not specialize are not aware that the condition does not always present the same way in all patients. https://multiplesclerosis.net/diagnosis/ This article explains how a diagnosis is often made and may be helpful as well. Donna Steigleder, Moderator

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  • By TammyJean

    I, too, am frustrated, to say the least. Long story short: I’ve been having symptoms and “flare-ups” for the past decade that were all brushed off as other ailments/issues (Miniere’s, IBS, herniated discs, nerve damage, etc..). I have SO MANY symptoms, the worst and most debilitating being the hot/cold intolerance with freezing cold sweats even in 90 degrees and chronic fatigue. But I have symptoms throughout my entire body, head-to-toe at this point. After receiving a f lu va ccine 8 months ago, I had my worst and longest flare-up ever and very little down time between flare-ups now, whereas I used to have several months between flare-ups, now I am lucky to have a week of feeling “normal” in between flares. MRI of my brain done 6 mos. ago (2T although I asked for the 3T) was normal. That was ordered by an endocrinologist, so I am just now finally being referred to a neurologist for further evaluation, but can’t get an appt. for 3 – 4 months! I’m so depressed and desperate for a diagnosis so I can get treatment and feel better and maybe get some of my life back. Just about everything else has been ruled out. So sorry that you are all going through this as well and hope you have found some answers since this thread has started.
    ~Tammy Jean

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  • By Kimberlybthatsme

    I am so sorry you went through that and hopefully still not going thru it. I too have a very low lesion load. I just changed MS docs (again- – long story) but she is closer to home and came highly recommended by another MS’er. The first thing she said to me after looking at my MRI was I DON’T HAVE MS. Who diagnosed me…she wanted more info. 20 minutes later after she looked at my on line records (tests- LP, blood etc) she came back in and said well I guess I do agree with his diagnosis (but I think she said “for now”, not sure because I was 1, suffering from a serious migraine at the time and 2, in shock she even said it). I realize there are a ton (I guess you can say ton bc everyone else does) of other diseases out there that mimic MS (which I’ve been tested for a few) but when you have every MS symptom known to man WITH a lesion or two…walks like a duck, talks like a duck…
    Some docs rely too heavily on peers and MRI’s. I can tell you first hand that MRI’s DO NOT PICK UP ON THINGS. I had a double fusion back surgery in 2013…I had to wait over a year before having it done due to insurance denials. During that year and prior to that year I had SEVERAL MRI’s and x-rays done. The doc went in, did the double fusion and when I woke he tells me, oh when I got in I saw that your body had already started to fuse itself together but I did the fusion anyway. Ummm, what? First, why and how did ALL of the MRI’s NOT see that and 2nd, why would he do that? If my body was healing itself why would he put me thru that? It failed by the way. I’m in worse/same pain that I was prior to surgery. My point is…MRI’s don’t pick up on stuff…so I would bet my life that MRI’s are not picking up on half the lesions we MS’er have….just my opinion. I hope you have gotten all of this sorted out. Good vibes sending your way…

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  • By Kimberlybthatsme

    @tenyatallon a LP is a lumbar puncture where they draw fluid out of your spine to test for certain bands and proteins.

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  • By JohnnieG

    I am currently going thru what everyone else has. Neurologist #3. Have been told by previous 2 they swore its MS but clean mri, well just say spots caused by headaches/age. I’m 43 now. Haven’t worked for 2 years now. Was a pretty good athlete, active dad. Now, hard to just do daily tasks. But feels good reading they are others like me and I’m not crazy. LP this Wednesday after 3 mri.

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    • By crustychuck

      There was a three week period whereas i had dyarthria and weakness of hands then it went away. Had a clean mri…taken before symptoms got bad. Im going to get another one but if that comes back clean i am going to go crazy. Can an mri even pick up a lesion after one attack?

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    • By Kimberlybthatsme

      @crustychuck, I really, really, really think docs rely on MRI’s too much. I think in 5 years or less they are going to discover that MRI’s don’t pick up on pin hole lesions. (Yeah, I just made that term up) but think about it. What are lesions? It’s a scare from our body attacking our protective system (Mylan) of our CNS. What if the MRI’s don’t pick up on lesions (scars) that are as tiny as a pin prick, What if our body attacks itself and only leaves these tiny holes each time it attacks itself and that only AFTER our crazy system attacks the same spot over and over again does it leave a sizable hole big enough to leave a lesion that an MRI can pick up. Well, what about the tiny ones we have but are not being picked up? Doesn’t stuff still get through the protective sheath and cause havoc with our CNS?
      Listen, I’m not a doctor or scientist but MOST docs/scientist rely on data and books and other “smart” docs opinions. This to me is COMMON SENSE which MOST docs do not have. Their brains don’t work that way. They are book smart and some brilliant but common sense…none.
      It just makes sense to me that if A LOT of us MS’ers are saying/suffering the same things and being told the same thing (clean MRI, nothing is wrong, it’s not MS) it would seem to me that the MRI is missing way too much. We can not all be saying/feeling the same way and ALL have clean or low lesion loads. The odds of that is astronomical at best! So they are missing something or the MRI is missing something.

      Mark my words…5-10 years from now they will be like “oh, that’s not how it worked…” or more like “damn, the MRI machine was so antiquated back then…”
      Of course this is just my non-book smart theory…but who am I, just another MS’er suffering while the docs say I’m good!

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  • By Kimberlybthatsme

    @johnnyg do t know if you read my post above about what I think about MRI’s but I would not put a lot of weight on what the MRI says. Hang in there!

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  • By JAG33

    Not sure if this is the right place, but figured it was worth a shot.

    Late 20s White male here, who has been dealing with symptoms recently, and wondering if this sounds like MS, as neither myself nor my doctors have been otherwise able to identify what is causing my issues.

    Of note, I had a brain MRI 10 days ago, which came back unremarkable, except for a single “punctate” that I am being told is unrelated to my symptoms.

    The last week of October, I spontaneously began having minor but noticeable double vision – mostly around lights, and with lighter objects against dark backgrounds. It seemed to be more out of just the left eye than both, but it was unmistakable and obvious.

    I went to an opthalmologist who saw nothing wrong with me. I followed up with him in mid-November after my complaints continued. He did a visual field test which came back normal. He recommended a second opinion and to see a neurologist if symptoms continued.

    I saw a second opthalmologist the third week of November, who repeated the VF test (nothing concerning) and recommended strengthening my contact lenses. This did nothing for the vision issues, and made my eyesight blurrier.

    I followed up with that 2nd doctor a week later. Told him the lenses weren’t working. He advised seeing a neurologist or neuro-opthalmologist. He saw nothing wrong with my eye(s) or optic nerve.

    The last few days of November, after stopping the lenses, the vision issues subsided and then went away. However, I developed a numbness on my left cheekbone that didn’t go away. Over the course of a week, the numbness spread from the left cheekbone, down the left side of my cheek/jaw, and eventually over to the right side of my face, also cheek jaw. It also “spread” to my right forearm/hand and three outside fingers (not thumb/pinky).

    By this point (first week December) I saw a neurologist, got an MRI w/ and w/o contrast approved, and had the scan done. While waiting for results, the doctor said he thought the issues could be related to migraines (I get a few optic migraines per year, but none of these symptoms have ever presented, and I have not had any headaches throughout the period I am describing). He also thought it could be related to my bicuspid aortic valve, a congential heart defect that has caused me “relatively severe aortic regurgitation” seen on echocardiograms, but has yet to cause me tangible issues.

    The MRI can back “clear” aside from a single “puncture” that is apparently related to migraines, and I am told this is not related to my symptoms. This “dot” was not there 3 years ago at a prior MRI I got to investigate the migraines.

    Since last week, the numbness turned to tingling, then burning, then subsided, and has now mostly faded away. However, since Monday I have experienced (progressively worsening) dizziness/vertigo, especially rough the last day or two.

    I am somewhat at a loss for what to do next. No one has mentioned MS to me, but after 6 weeks of symptoms, I had to do some investigating myself, and this is the only condition I am coming across that is familiar. In fact, reading some accounts of those on here, my jaw dropped when I realized how similar my experience has been. However, due to the MRI results, I am guessing the doctors are not considering MS to be the cause. The dizziness the last few days has really left me doubting whether MS can be ruled out though.

    Apologies for the wall of text, just trying to be thorough.

    Thanks in advance for any insight. I appreciate what those in this community are going through and am sincerely thankful for any response or information I can come by.

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  • By parker.keller

    Hello,
    Here’s my story and my adventure with MS. I am 21 years old this past August. Back in January one morning I woke up and I was very very dizzy and couldn’t focus on anything. It was like I had double vision or my eyes couldn’t keep up with one another. I went to see a nurse practitioner at the clinic where I work and she said it was due to sickness going around and my body being worn out from fighting sickness which let me feel relieved. The symptom didn’t let up and it also started making me feel fatigued beyond beleif. I also started getting what it known as L’hermittes sign, every time I looked down it sent a very strong electric shock through my body mostly affecting my arms, hands and legs. I went to see my family doctor and he wanted an MRI of my back to see if I have received an injury causing these symptoms. After 3 MRI’s in different parts of my back he called me telling me that I have good amount of scarring on my upper spine and neck area and he was sending me to a neurologist. I was of course frightened and nervous cause I didn’t know what to expect. I got very lucky with receiving an amazing neurologist named Dr. Pugar who is the president and founder of the Dayton Center of Nuerological disorder. He did an MRI of my brain to see if it would indicate MS. He called me after a few weeks telling me that I undoubtedly have MS due to the significant amount of scarring on my brain and cervical sign. He let me know I’m very lucky to be able to be walking right now due to the size of the scarring and to have full brain functions like I do. I was diagnosed this past May 2018.. 3 months before my wedding.. I started on infusions right away and am about to have my second one, I am receiving Ocrevus which is an infusion every 6 months. I will tell you this though. For the last 4 months I can say that I haven’t had any symptoms that I initially had, no L’hermittes sign or sight problems. I would say if anyone needs a go neurologist to go to him… he’s nationally known and I would say one of top on the nation after doing my research on him. It’s nice to see other people’s stories to show me that I’m not alone.. as a 21 year old when all my friends don’t have to deal with this. I have a God watching out for me. Thanks everyone.

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    • By manician

      I have been having various symptoms ( the reason for me visiting this site) firstly I’m slightly confused because everything I’ve read so far regarding mri lesions and ms, have said that Ms doesn’t show up anything specific on an MRI ( I’m not trying to say this is fact and to criticise what anyone says) s
      Since 2015 I’ve had various symptoms, mainly with my legs being heavy/clumsy a vertigo type thing ( I presume it’s vertigo but to be honest nobody has explained vertigo symptoms to me) pressure in the back of my head/neck
      I did have tachycardia but that has lessened after quitting smoking and mental health medication.
      I’ve had 3 mri’s all different UK hospital’s ( 2015 2016 2018) seen two neurologists and a stroke/Cadasil professor ( who said I don’t have cadasil , despite having symptoms and him only looking at one MRI for his evidence , saying my wmhs are non specific, and basically saying it’s psychosomatic, but I’ve seen many people who have had the same and later been diagnosed with ms or Cadasil etc)
      I’m scared, also if it is genetic, then I’m worried for my children, there is a genetic test for Cadasil but I have to be referred even if I paid for it myself ( which I don’t have the money for) by a UK neurologist l.
      The story is obviously far more detailed but isn’t easily written because of the quantity of issues I’ve had( Similar to most of you probably) some Professionals’have been very dismissive and rude & have dismissed symptoms, that I have since found out are actually relevant ( also find that just because I’ve had panic attacks doctors tend to put everything down to mental health, and are already biassed against any possible physical/neurological cause,
      And all of this despite my last MRI may 2018 saying I have” High signal within the white matter of both frontal lobes and subcortically” and could be secondary to Cadasil, but the Cambridge Prof said I don’t??? Who do I trust? Who can help? I’m desperate and depressed, I can’t even get counseling to help me through this , I have constantly tried to help myself, to give accurate information to any health professionals I see including my GP, and it just drags in year to year, appointments being cancelled & rescheduled many months later. I was supposed to have a follow up appointment at Queen Elizabeth hospital in Birmingham UK , initial assessment was last June and they said they wanted to do their own mri’s and I have had no response to that, my GP surgery didn’t chase it up even after I told them various times , so then I got a January appointment and it was almost immediately postponed to July 2019 !it’s ridiculous.

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    • By Donna Steigleder Moderator

      Manician, I am so sorry for all you are going through. I am sure you are both very frustrated and frightened as you try to find out what is happening in your life. I am unfamiliar with the UK medical system but is there a multiple sclerosis specialist near you that you could request an appointment to see? Here is an article on making a diagnosis of MS that you might find helpful https://multiplesclerosis.net/diagnosis/ as well as one on symptoms of MS https://multiplesclerosis.net/ms-symptom-checker/. Perhaps if armed with this information and your prior medical records, if you saw a specialist in MS, you might be better able to find some answers. I hope this helps and you can get in to see someone before July. I know that feels like a very long time to wait since you have been waiting so long already. Donna Steigleder, Moderator

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  • By drewdrewatx

    Hi Jag33, did you ever end up having the brain, or spine MRI?

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  • By kackywest220

    Hi! This morning when I woke up and felt horrible, I decided to look for forums to see if anyone else was experiencing what I am right now. 3 months ago yesterday, I woke up and when I got out of bed, I couldn’t lift my feet to walk. I could barely shuffle. The week prior to this I started with tingling and strange sensations in my feet and each day it was acending upwards. Went to the ER and was admitted to have further test done. During my stay, I had 2 lumbar puncture, tons of blood work and a spinal mri and brain mri. There was so many labs I don’t know how they are keeping up with it. One lab showed 3 o-bands in my CSF but not in my serum labs. Then the MS panel read I didn’t have bands in my CSF. It was just last week and 3 neurologist later to notice that confliction. They did find 3 spots on my brain but chalked that up to my age, or maybe headaches. I was discharged from the hospital with 2 neurologist basically scratching their heads and they sent me off to PT. I was having to use a walker for any mobility. In Feb. the symptoms went away and they said they believed it was just viral. So my thought, yay… best case scenario. Well 2 weeks went by and one night I was watching a movie with my daughter and I was seeming 2 of everything while I just felt the tingling ness take over my body again within minutes. I went to bed hoping it was nothing until I woke up the next day and could barely move. I called my neurologist and they wanted to bring me in for a nerve conduction study (which was normal). That’s when he decided to wanted to redo the brain mri now instead of waiting until June like he had planned. The vision issues come and go but the tingling in my hands and feet are still there. My skin is super sensitive too. I hate getting dressed and have clothes rub against my skin and I can’t stand the feeling of anyone touching me. I go in a couple of weeks for the mri and depending on the results from that, they will decide if they need to do another LP (my 3rd one). I don’t like complaining to anyone because I don’t want to be looked at like a hypercontriact. My coordination and balance is getting worse and let’s not start on the fatigue. I could only work one full day last week. My fear is that the scans will look the same and they’ll tell me to come back in 6 months. And what if they are the same then but i’m still having the relapses. How have some of you coped with the medical game of “hurry up and wait” when you know something is going on? It’s affexting my work life and home life and being a single mom there have been days i’ve Had to push through it all to keep some normalcy in my daughters life. I have felt so alone with how i’m feeling because no one gets it and i don’t expect them to. After reading these post, I don’t feel as alone or as crazy that this was in my head. Thanks for sharing all of your stories and giving me that sense of ease for the time being. I do have something scheduled with another neurologist in Atlanta (3 hours away from me) to get a 2nd opinion.

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