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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 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 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 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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