I Have Neurosarcoidosis

A Neurosarcoidosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Neurosarcoidosis. You're not alone. 19 People

    Jenny's Story

    Hi, my name is Jenny, and I was diagnosed with neurosarcoidosis in May, 2008, just 6 mos. ago.  I had never even heard of it!  And I know not one single person who has this disease.  I would love to hear from others, so I don't feel so alone.  I suddenly...
    jennydc jennydc
    3 Responses Dec 4, 2008

    Neurosarc Take 2

    Hey! I was diagnosed with Neurosarcoidosis in June 2007. Diagnosis didn't come easily. I had my first symptom in the April and by the June when I was finally admitted to hospital, I had SEVERE head pain, severe dizzyness, loss of vision, loss of appetite, vomiting, numbness and...
    Paxtonie Paxtonie
    Oct 12, 2011

    My First Symptom Was In August 2011. Diagnosed In November 2012

    My symptoms all started in Mid August of 2011. I had Bell's Palsey on the left side of my face. When I first noticed I was really scared, I thought I had a stroke or something. I went to the doctors and they said it was just Bell's Palsey. They put me on steroids for a month and...
    gazza2706 gazza2706
    22-25, M
    Nov 17, 2012

    I Have Neurosarcoidosis

    Hello, My name is Lacey.  I was diagnosed with Neurosarcoidosis in July of 2011 after a long 6 month battle trying to figure out WHAT was going on.  Since then they have been treating me with Prednisone and Methotrexate.  I have had a very hard time trying to find anything on...
    laceyrae laceyrae
    1 Response Sep 11, 2011

    Hello group! This past month has been a

    whirlwind. I developed numbness and tingling down my left leg one month before developing horrid low back pressure like pain. Sometimes my upper back would spasm too. One MRI lead to another, and then a full MRI of my entire central nervous system. I was initially told I had...
    Got4kids Got4kids
    56-60, F
    1 Response May 24, 2014
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