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    New here, a little help before neuro appt?

    I am so happy I found this forum! I just wish I had found it sooner! I have an appointment in a couple of days and I am just looking for a little advice for when I see my new Dr. and a little help reading my MRI results. A little history on me, I am 44 yo male. I first went to see my regular Dr. to see if he could tell my why my upper body and arms went numb and vibrated when I tilted my head forward. He didn't know of anything so he consulted a Neuro on the phone. The Neuro ordered an MRI of the C-Spine. That MRI came back with an intramadulary mass/lesion at c2-c3. Dr ordered new MRI of C-spine and brain with and without contrast. These are the highlights of the new MRI report.

    Brain:
    Multiple, approximately 7-10, small supratentorial T2 hyperintensewhite matter lesions. One of these lesions is situated along thecallosal septal interface of the posterior body of the corpuscallosum. Several of these lesions are periventricular in locationand oriented perpendicular to the ventricular margins withdistribution suggestive of demyelinating disease. Remaininglesions are small and periventricular in location but arenonspecific.There is a small T2 hyperintense lesion involving the left ventral surface of the pons suspicious for demyelinating disease. Noabnormal enhancement to suggest active demyelination/inflammation.

    ** IMPRESSION **:
    1. Multiple, approximately 7-10, small supratentorial T2hyperintense white matter lesions and single infratentorial lesioninvolving the left ventral pons. Multiple of these lesions havedistribution suggestive of chronic demyelinating disease asdescribed above.

    C-spine:
    Spinal cord: Redemonstration of the short segment T2 hyperintenseintramedullary lesion involving the bilateral dorsal columns atthe C2-C3 level. This measures 10 mm in longitudinal length and 3x 5 mm transaxially is not significantly changed in size comparedto the recent prior noncontrast cervical spine MRI from 07/01/15. No abnormal enhancement is associated with this lesion on thepostcontrast sequences. Remainder of the cervical spinal cord hasnormal volume and signal intensity. No abnormal intrathecalenhancement.
    ** IMPRESSION **:
    Short segment intramedullary T2 hyperintense lesion involving thebilateral dorsal columns of the spinal cord at the C2-C3 levelwhich does not demonstrate abnormal enhancement or significantchange compared to 07/31/15. This could represent a demyelinatingor inflammatory lesion.

    So I have read up on demyelinating disease which of course leads to MS as the most likely cause, I am looking for any advice on questions I should ask my Dr. This has all come a bit out of nowhere since I have not had any of the traditional MS symptoms. I just want to go in as well armed as I can. I have never had any major heath issues that were not self induced so this is the "most important" appointment I have had. Any help or advice is greatly appreciated!
    Mark

    #2
    Markd - sorry that you had to find us. If you haven't had lots of blood work, the neuro will probably order it to rule out other conditions that can mimic MS. There is a good sticky thread on lab work that explains what the tests are and why. If the blood work does not identify any other cause, some neuros may order lumbar puncture.

    I would ask what the next steps are, what conditions are being tested for. If doctor is leaning towards MS, understand why and also ask about their experience with MS. Regardless, before you leave, ask if there are symptoms you should track or anything he wants to be notified of prior to your next appointment.

    If you do get diagnosed at some point with MS, there are lots of other questions. But I wouldn't jump ahead to that . I would want a second opinion on diagnosis and to be treated by an MS specialist.

    Good luck.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      One thing I would consider if possible is taking someone with you - I bring my wife along whenever possible. I personally find I don't catch everything said since I'm still processing the previous statements and he's moved on to the next. He will repeat if asked and with my wife's notes we seem to catch everything.

      Comment


        #4
        I agree with the following 2 statements.
        1. Bring someone else if you can....for catching all the details, and asking questions
        2. If the neuro is not an MS specialist, and he/she seems to be indicating it could be MS, you do want to ultimately make sure that you are seeing a neuro who specializes in MS.

        Good luck.
        RRMS Dx: 3/23/15
        (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
        Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

        Comment


          #5
          I couldn't agree more about bringing someone with you to help remember/catch all of the information. Don't be afraid to bring a list of questions with you too. I am notorious for forgetting to ask questions I meant to unless I have them written down with me. Also, taking someone with you means that they might think of something that you won't piece together at the time of the visit, like a symptom that you overlooked because you just don't pay much attention to it but they notice it more. I tend to write things down in the office as well so that we don't get confused later. Saves on arguments on who was right on what the doctor did and did not say. LOL

          Best of luck to you and I hope that you have a great visit with nothing but positive news!

          Comment


            #6
            Had my appointment today

            First off, thank you to all of you that replied! Well I had my appointment today, the wait seemed like forever! I brought my wife with me per your advice. She has been through some pretty rough stuff herself in the last few years so she was a very stabilizing partner to have. The doctor took a great amount of time going through my MRI results with us and giving me a full neuro exam. Finally got around to the MS. Said it was "highly likely" based on MRI and symptoms. He ordered an lp to confirm if it has been active. Then he sent me up to get my eyes checked since I've got a little double vision and one pupil is larger than the other. He said we will talk meds after the lp. Seemed like the doctors talked to me like they were giving me a death sentence. It was a little disheartening. So I guess that is where I sit for now. Been a long day. Thank god for my family! And thank you again for taking the time to read and respond to my story.
            Mark

            Comment


              #7
              Thanks for letting us know how it went

              Thanks for letting us know how your appointment went. Sorry that the news you were given is probably not what you wanted to hear. In the meantime...before going back to neuro/after the LP, I suggest getting familiar with the medicine options....and posting any questions on here. There are subforums for people on each medication that you can read through and get an idea of what people experience with different meds.

              Good luck to you. HOpe you stay in touch.
              RRMS Dx: 3/23/15
              (Optic Neuritis Dx 2/27/15; Feb/2014 right leg numbness--at the time diagnosed as Sciatica, but probably first episode)
              Started Tysabri 5/22/15: (Infusions: 5/22/15, 6/18/15, 7/16/15)

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