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    Chronic Demyelination?

    Hey guys!

    So I am 25 years-old, and had a routine MRI to check on a lesion (this one is said to be a 4 mm tumor) on my pituitary gland. After checking it, they found another lesion on my right temporal lobe-- this one was said to likely be chronic demyelination-- 8 mm in size. Long story short, I went through all of the testing-- visual, spinal tap, everything.

    I had mentioned to my neurologist that in 2014 my eye doctor had told me that I had a slight "enlargement of the optic nerve" in my right eye. In 2015, I was re-checked and my optic nerve was back to normal. My visual test to aid in the diagnosis of MS was also normal. The only abnormal test was the urine test which they checked for numerous proteins...it came back positive for all proteins they checked for (it was suppose to be negative). And a delayed reaction in the reflexes of my right ankles.

    I think it is important to add that in December of 2017 I had a sudden mental health emergency where I lost touch with reality and nearly ran into a tree, and 4 months later the MRI revealed this 8 mm lesion on my temporal lobe (which is said to control emotions, behavior, memory). After my follow-up this past June my neurologist basically told me he did not know what I had since the majority of my tests came back normal. He said he believes at this time that it is unlikely that I have MS but said he could not say for sure.

    I have to be checked every 6 months for new lesions. I have had issues with stiffness and tingling in my arms and legs. My neurologist said that one of the nerve tests showed that I had carpal tunnel syndrome, but that does not explain my other symptoms of tingling in my legs. He told me he could not explain those symptoms to me. He also speculated that I could have atherosclerosis, which is hardening of the arteries in the brain (which honestly makes no sense to me.)

    I am confused and wondering if this could have been clinically isolated syndrome. My mother has a history of nerve issues, she has Bell's palsy and diagnosed with fibromyalgia (tests revealed inflammation in her nerves), so these things do run in my family.
    I am concerned and would like my doctor to take more initiative... and it seems to me that he doesn't have an answer. What should my next step be? My next MRI is in October.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

    #2
    Hello SyanneC,

    The only abnormal test was the urine test which they checked for numerous proteins...it came back positive for all proteins they checked for
    You would need to talk to your Dr. as to the meaning of this test, if any. I can tell you that a urine test, regardless of results, doesn't give any indication of MS what so ever.

    There is no single test, by it's self, that can give a diagnosis of MS, that includes the MRI. Not all lesions mean MS.

    Try to have patience and let your Neurologist do the follow up MRIs. Right now there doesn't appear to be enough information to call what you have, Multiple Sclerosis. Maybe at some point you will be diagnosed but it's possible whatever is going on isn't MS.

    Did you have a MRI of the spine?
    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
      Hi Snoopy! Thanks for your reply. I did have MRI of the spine, and that was normal. I have scheduled an appointment with another neurologist for a second opinion. My brain MRI stated, "an area of gliosis or chronic demyelination is seen, though the possibility of a glioma is not excluded." I have never had a head injury, so that is not the cause of the lesion.

      I do think it is possible that it could be a glioma, or perhaps it is simply an isolated incident too early to diagnose. I feel safer receiving a second opinion even to explore the notion of it being a glioma. I do understand that not all lesions mean MS. The reason MS was brought up was because my doctor had believed it was possibly MS before any testing was done.

      I was looking for advice and experiences, and appreciate your response and will definitely continue with the follow-up MRI's every 6 months. Thank you!

      Originally posted by SNOOPY View Post
      Hello SyanneC, You would need to talk to your Dr. as to the meaning of this test, if any. I can tell you that a urine test, regardless of results, doesn't give any indication of MS what so ever. There is no single test, by it's self, that can give a diagnosis of MS, that includes the MRI. Not all lesions mean MS. Try to have patience and let your Neurologist do the follow up MRIs. Right now there doesn't appear to be enough information to call what you have, Multiple Sclerosis. Maybe at some point you will be diagnosed but it's possible whatever is going on isn't MS. Did you have a MRI of the spine?

      Comment


        #4
        Best wishes on your second opinion

        Let us know how it goes!
        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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