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    Still in limbo....

    Here are the results of my follow up MRI....I still have all my lesions (about a dozen) and my cavernous hemangioma behind my right eye is stable. I now also have a pineal gland cyst. And 2 new vertebtral hemangiomas in my c-spine.

    Any help with knowing if this is MS would be greatly appreciated. I am slowly and steadily getting worse. My follow up appt isn't until May 13th.

    "MRI-HEAD WO CONTRAST (#2910151, Final, 04/03/2019 2:24pm)EXAMINATION: MRI-HEAD WO CONTRAST

    DATE OF EXAM: 4/3/2019 3:35 PM

    DEMOGRAPHICS: 47 years old Female

    INDICATION: G35: Multiple sclerosis (HCC) History: Multiple sclerosis .
    Number of Series/Images: 9.

    COMPARISON: Outside MR from 2/3/2018

    TECHNIQUE: Multisequence, multiplanar MRI of the brain was performed without IV contrast.


    FINDINGS:
    MRI BRAIN:
    There are no areas of diffusion restriction to suggest an acute infarct. The pituitary
    gland is normal. Cystic pineal gland noted. Cerebellar tonsils are appropriately
    positioned.

    Mild scattered T2/FLAIR hyperintensities are redemonstrated in the subcortical and
    periventricular white matter. These appear stable compared to 2/3/2018. No new lesions
    are definitely seen.

    Remainder the brain parenchyma appears normal in signal. Ventricles are normal in
    size and configuration. No abnormalities are demonstrated within the large intracranial
    flow voids. Paranasal sinuses and mastoid air cells are clear.

    Stable configuration of the 1.3 x 1.1 cm rounded mass in the retro-orbital fat on
    the right. There is mass effect on the optic nerve and extraocular muscles, unchanged
    from the prior study.

    [IMPRESSION]

    1. Stable mild white matter disease compared to 2/23/2018. These remain nonspecific
    but are compatible with the reported history of multiple sclerosis. No new lesions
    are definitely seen.
    2. Similar configuration of the right intraorbital mass.



    #2
    Hi workingk9-

    Sorry no one has replied to you, but no one here has the qualifying ability to interpret your finding. It's good you got a follow up MRI and your Dr will hopefully shed some light when you have your next appt. I'm sure it must be hard to wait until May 13th!

    Just curious, is your neuro an MS specialist?
    Take care of yourself and let us know how your appt. goes
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      WorkingK9,
      I'm sorry you are in limbo. I know how debilitating and frustrating that can be.

      From the notes it looks like the doctors suspect MS, but you haven't fully met the McDonald
      Criteria for a diagnosis. Since there is no direct test for MS, doctors have come up with the McDonald Criteria to standardize the MS diagnosis. Part of the criteria is to rule out other reasonable causes which is very important because MS can mimic so many other diseases/disorders.

      Another part of the criteria is the "Dissemination of lesions in the nervous system in space and time are required, but the revisions provide additional avenues for obtaining supporting evidence of dissemination." Reading from your MRI report it appears you do have lesions with similar characteristics of MS lesions, but there is no definite evidence of new lesion activity. Without new lesion activity the "dissemination in time" requirement of the McDonald criteria may not have been met.

      Your doctor is going to be the best source of information. You could also consider getting a second opinion from a MS Specialist. I would also talk to your doctor about what evidence is lacking for a clinically definite multiple sclerosis diagnosis. I would also their opinion on clinically isolated syndrome (CIS). CIS is basically one attack of what looks like MS.

      Link to the McDonald Criteria:
      https://www.nationalmssociety.org/Ab...o-Speed-the-Di

      Link to information on CIS:
      https://www.nationalmssociety.org/Sy...Syndrome-(CIS)

      I wish you well ...

      Comment


        #4
        Originally posted by Seasha View Post
        Hi workingk9-

        Sorry no one has replied to you, but no one here has the qualifying ability to interpret your finding. It's good you got a follow up MRI and your Dr will hopefully shed some light when you have your next appt. I'm sure it must be hard to wait until May 13th!

        Just curious, is your neuro an MS specialist?
        Take care of yourself and let us know how your appt. goes
        Thank you-- he does specialize in MS but I don't know if he's an actual "MS specialist", if that makes sense.

        Carey

        Comment


          #5
          Originally posted by Marco View Post
          WorkingK9,
          I'm sorry you are in limbo. I know how debilitating and frustrating that can be.

          From the notes it looks like the doctors suspect MS, but you haven't fully met the McDonald
          Criteria for a diagnosis. Since there is no direct test for MS, doctors have come up with the McDonald Criteria to standardize the MS diagnosis. Part of the criteria is to rule out other reasonable causes which is very important because MS can mimic so many other diseases/disorders.

          Another part of the criteria is the "Dissemination of lesions in the nervous system in space and time are required, but the revisions provide additional avenues for obtaining supporting evidence of dissemination." Reading from your MRI report it appears you do have lesions with similar characteristics of MS lesions, but there is no definite evidence of new lesion activity. Without new lesion activity the "dissemination in time" requirement of the McDonald criteria may not have been met.

          Your doctor is going to be the best source of information. You could also consider getting a second opinion from a MS Specialist. I would also talk to your doctor about what evidence is lacking for a clinically definite multiple sclerosis diagnosis. I would also their opinion on clinically isolated syndrome (CIS). CIS is basically one attack of what looks like MS.

          Link to the McDonald Criteria:
          https://www.nationalmssociety.org/Ab...o-Speed-the-Di

          Link to information on CIS:
          https://www.nationalmssociety.org/Sy...Syndrome-(CIS)

          I wish you well ...
          Lots of great info-- thank you! I have had many neuro "attacks"-- I can't really call them MS flares or relapses since I have no official diagnosis, but I have probably one every month or so that typically lasts for a day to a few days. I'm thinking that means I have progressed beyond a CIS....or does the CIS refer to the lesions initially found? That's one thing I wasn't clear on.

          Being patient is so hard....one month from today is my neuro appt. It's odd....because I have been having symptoms for years....so I wonder if I had had an MRI 5 years ago if I would have had only 1 or 2 lesions, then my MRI last year showing a dozen lesions would have met the criteria of space and time...but since I haven't developed any new lesions since the initial MRI 12 months ago, there isn't evidence of dissemination in time....so frustrating! lol

          Since I've had more than one attack and I have more than one lesion....it seems I meet the McDonald criteria. I will definitely be asking a lot of questions at my appt.

          Pretty much everything else has been ruled out. I've been worked up by cardiologists, immunologist, pulmonologist, gastroenterologist, rheumatologist, neurologist, neurosurgeon...I was negative for RA, lupus, sjogrens, etc....I've been given diagnoses of Chronic Fatigue Syndrome (I don't have it...), fibromyalgia (pretty sure I don't have that...I have a VERY high pain tolerance, which is pretty much the opposite of fibro). I've had lung function tests, echos, stress tests, EMGs, EEGs, MRIs, you name it....my abnormalities are the lesions in my brain, the tumor behind my eye, the tumors in my c-spine, the tumor on my pineal gland, low IgA and a low IgG subclass (that's why I have an immunologist), 3 leaky heart valves (including my aortic valve, but all leaks are mild). Positive for Lyme, EBV, bartonella, C. pneumonia, low CD57 (now normal after treating for 2 years! YAY!), high homocysteine due to MTHFR mutation, low folate, low Vitamin D, high CA-125, adenomyosis, fibroids.....I think that's all, lol. I tell my husband I am a buffet of health issues lol

          Carey

          Carey

          Comment


            #6
            Originally posted by workingk9 View Post

            I have had many neuro "attacks"-- I can't really call them MS flares or relapses since I have no official diagnosis, but I have probably one every month or so that typically lasts for a day to a few days. I'm thinking that means I have progressed beyond a CIS....or does the CIS refer to the lesions initially found? That's one thing I wasn't clear on.
            CIS is basically your first "documented" flare up. There's no way a neurologist can determine when past damage occurred or how many flare ups you have had. So all accumulated damage gets lumped into "one past flare up.'


            Originally posted by workingk9 View Post
            It's odd....because I have been having symptoms for years....so I wonder if I had had an MRI 5 years ago if I would have had only 1 or 2 lesions, then my MRI last year showing a dozen lesions would have met the criteria of space and time...but since I haven't developed any new lesions since the initial MRI 12 months ago, there isn't evidence of dissemination in time

            Correct. Until a MRI shows new lesion activity it might be difficult to get a diagnosis of Clinically Definite Multiple Sclerosis (CDMS). Unfortunately, you and your doctor are waiting for another shoe to drop. That shoe in a new lesion consistent with MS to meet the McDonald Criteria.
            That's why CIS is important and where many neurologists will begin treatment. Early treatment may delay, or possibly even prevent, the onset of CDMS.


            Originally posted by workingk9 View Post
            Since I've had more than one attack and I have more than one lesion....it seems I meet the McDonald criteria. I will definitely be asking a lot of questions at my appt.

            I'm sorry, but you've only had as many attacks as your neurologist has "documented." My guess is they have credited to you as one attack or you would have already been diagnosed. Also multiple lesions only count if dissemination of time or space is met. You could have a 100 lesions and a neurologist could be waiting for the 101st lesion to diagnose.

            It may sound silly, but the criteria was partially developed to help prevent people from getting misdiagnosed with MS. There is some variation on how a doctor might apply the criteria. Some doctors probably would have already diagnosed you. Others would have diagnosed CIS and wanted you to start medication. Others would have diagnosed CIS and not started medication.

            That's why it's very important to find the right neurologist for now and the future. Make a prioritized list of questions for your appointment so you don't forget anything. Keep track of your symptoms as well.

            I wish you well...

            Comment


              #7
              Originally posted by Marco View Post
              CIS is basically your first "documented" flare up. There's no way a neurologist can determine when past damage occurred or how many flare ups you have had. So all accumulated damage gets lumped into "one past flare up.'





              Correct. Until a MRI shows new lesion activity it might be difficult to get a diagnosis of Clinically Definite Multiple Sclerosis (CDMS). Unfortunately, you and your doctor are waiting for another shoe to drop. That shoe in a new lesion consistent with MS to meet the McDonald Criteria.
              That's why CIS is important and where many neurologists will begin treatment. Early treatment may delay, or possibly even prevent, the onset of CDMS.





              I'm sorry, but you've only had as many attacks as your neurologist has "documented." My guess is they have credited to you as one attack or you would have already been diagnosed. Also multiple lesions only count if dissemination of time or space is met. You could have a 100 lesions and a neurologist could be waiting for the 101st lesion to diagnose.

              It may sound silly, but the criteria was partially developed to help prevent people from getting misdiagnosed with MS. There is some variation on how a doctor might apply the criteria. Some doctors probably would have already diagnosed you. Others would have diagnosed CIS and wanted you to start medication. Others would have diagnosed CIS and not started medication.

              That's why it's very important to find the right neurologist for now and the future. Make a prioritized list of questions for your appointment so you don't forget anything. Keep track of your symptoms as well.

              I wish you well...
              Thank you! This was very helpful. I'll definitely be making a list of questions and concerns :-)
              Carey

              Comment

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