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Ever heard of Neurosarcoidisis?

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    Ever heard of Neurosarcoidisis?

    Hi everyone. I have a question, but first let me give you a little background. Last July I was diagnosed with MS. I have had several symptoms for the past 5 years (balance, fatigue, achey joints, tingling, etc). Each one could be explained away with other issues I was experiencing. Then I was diagnosed with uterine cancer. Had a hysterectomy and 2 days later lost the feeling from the hips down. After an MRI and CTScan to rule out a blood clot or pinched nerve, I was put back in the hospital for more testing. The results showed cervical and thoracic lesions, as well as brain lesions, and a diagnosis of MS was made. I also have a family history of MS (mother).

    9 months later, during a routing MRI, it was noticed that the lymph nodes in my chest were enlarged. Another CTScan and a Bronchoscopy/biopsy showed Sarcoidosis. When I went back to my neuro, she said she thought I had neurosarcoisis. This is a fairly rare autoimmune, which can be an MS mimicker. She took me off Copaxone and put me on Methotrexate to reduce the inflammation. She wants to rule it out before putting me back on copaxone. I have read that you can have both MS and neurosarcoidosis. Just wondering if anyone has ever heard of this or has been diagnosed with it. Very frustrated and confused by it all. Thanks for letting me vent!
    RRMS: Diagnosed July 2013
    Assistive Device: cane.
    Meds: Copaxone, Ampyra, Vitamin D

    #2
    Sorry you didn't find anyone familiar with sarcoidosis. I looked at the search function on this site and did find a couple threads on sarcoidosis, but there's not much info, here are the links:

    http://www.msworld.org/forum/showthr...ht=sarcoidosis

    http://www.msworld.org/forum/showthr...ht=sarcoidosis

    I did a quick google search and noticed that there are several forums on sarcoidosis. That might be a good place to get info on neurosarcoidosis, and there might be folks on that forum that have had your experience of having an MS diagnosis and then finding out it was also sarcoidosis, or sarcoidosis is the correct diagnosis.

    Hope you get some answers.

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