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In limbo for 6 months, terrified, not sure where to from here

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    In limbo for 6 months, terrified, not sure where to from here

    Hi all,
    I understand that no one can diagnose me over the Internet; I'm simply looking for some guidance. I appreciate your thoughts and advice in advance. I'm 26yo, healthy, no existing conditions. Roughly 6 months ago, one night I experienced difficulty swallowing food. It's almost as if the food would pause before I would begin swallowing, and I couldn't initiate the action. The problem was only with solid foods, and lasted for a couple of weeks (during this time, there were a few days where I could eat solid foods just fine). Since then, the problem has been intermittent, but for the most part, seems to have improved/occurred far less frequently. I had seen a gastro and ENT with no luck, so I was finally referred to a neuro. My biggest fear was having some sort of neurological disorder.

    The neurologist definitely did not think this sounded like a neurological disorder, but ordered a brain MRI w/wo contrast to be on the safe side. I received the results a few days ago, as seen below:

    "The ventricles and extra-axial spaces are normal in size for the patients age. There is no intracranial hemorrhage, hydrocephalus, or mass effect. There is no acute infarction. There are approximately 12 small foci of T2 hyperintensity the peripheral white matter of the paramedian anterior frontal lobes. The appearance is non specific. In a patient of this age, the finding most likely represents sequelae of chronic migraine headaches. Less likely, this may represent chronic micro vascular ischemic changes. **There is no specific evidence of demyelinating disease, however, the possibility of demyelinating disease should also be considered due to the patients age. There is no old infarction. There is no Chiari malformation or hindbrain herniation.

    Impression: Small nonspecific foci of T2 hyperintensity in the frontal subcortical white matter as described above. In a patient of this age, the finding most likely represents sequelae of chronic migraine headaches. The T2 changes on the MRI do not appear to be suggestive of any specific neurologic diagnosis. They are not worrisome".

    While the overall impression seems good, the bolded part has me concerned. I'm trying not to search the depths of Google, but my initial searches lead me to believe that any sort of hyperintensity at my age is not normal. Also, in the last week or so, I've noticed that I sometimes wake up with my left foot tingling, though this could all just be in my head due to the MRI results. This all obviously has me freaked out. Would I be crazy for seeking out a second opinion given the above? Any other advice is appreciated. Thank you all.

    #2
    Hi newtothis,

    In a patient of this age, the finding most likely represents sequelae of chronic migraine headaches.
    Many things can cause brain lesions including, but not limited to, migraines.

    The T2 changes on the MRI do not appear to be suggestive of any specific neurologic diagnosis. They are not worrisome".
    There is no specific evidence of demyelinating disease
    Your brain lesions are considered non-specific and don't appear to be due to a demyelinating disease (MS is one of the demyelinating diseases).

    the possibility of demyelinating disease should also be considered due to the patients age.
    This type of statement on a MRI is not unusual (Radiologist covering their butt). The MRI is not a diagnosis and your Neurologist would need to find clinical evidence (neurological exam/evaluation and other testing) that the MRI findings correlate to a Neurological disease process.

    Have you seen or spoken to your Neurologist since the MRI results? If so what did the Neurologist say.
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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      #3
      Thanks Snoopy. I have not spoke with the neurologist verbally, however we did communicate via email once the results were sent to me. He also said they were not worrisome. Two questions:

      1) Would it maybe be a good idea to send the MRI results to another doc for a second opinion?

      2) I see that white matter lesions can be caused by a host of things. Can they also be caused by physical trauma to the head? I had a pretty bad injury to the front of the head as a young child. I also played a contact sport growing up, and suffered a fairly bad concussion. Curious if these types of things can also cause white matter hyperintensities.

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        #4
        Hi newtothis,

        You can certainly get a second opinion, especially if you are not comfortable with what the current Neurologist has told you.

        Multiple Sclerosis is a disease of the Central Nervous System(CNS) which includes the brain and spinal cord. Lesion can show up anywhere within the CNS. You could ask for a spine MRI to see if any lesions show up there.

        I believe head injuries can cause brain lesions but that would best answered by a Neurologist.
        Diagnosed 1984
        “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

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          #5
          I just wanted to say that you are not alone. I'm in limbo as well. I have one lesion that is considered non-specific but due to some abnormal results of a neurological exam MS is a possibility for me. Unfortunately only time will tell. It is very difficult at times. But at this point I'm getting used to the waiting for appointments and waiting for test results that mostly turn out inconclusive.

          Just take it one day at a time and I suggest keeping a symptoms journal. You don't have to write down every single day but when something comes up that concerns you, jot it down. I have mine on the computer. There are apps for tracking symptoms too. Find what works for you. But it's important to have the history of symptoms to see if any patterns emerge and so you can best tell your doctor what has been going on.

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            #6
            My understanding is that while concussions may cause lesions, it is not the norm. I think that is why the blood test for concussions is really exciting now.

            Based on the report, it appears MS would be low probability. Do you get migraines by chance?

            If your neurologist didn't actually look at the MRI discs, you could let him know that since you have no explanation for your problems, you would feel more comfortable if he would look at the disc and not just rely on the radiologist report. Assuming he does and agrees with the report, I would ask him next steps.
            Agree with Snoopy on maybe spinal MRI and second opinion as possible options.

            I am guessing the ENT did a full work up? My brother has this problem, but he has been diagnosed with GERD. Did you notice any heartburn or acid reflux around the same time of the problem? Or we're you taking any new supplements or medications? Did anyone do a blood panel?

            Is your primary care physician involved and helping you?
            Kathy
            DX 01/06, currently on Tysabri

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