Road to NMOSD
In 2009 I began having more symptoms of blurred vision, double vision, back pain, leg pain Iretractable vomiting, nausea, hiccuping,walking became impaired. I went to ER. UTI and stomach pain, with unknown Etiology was dx. Saw surgeon whom ordered ultrasound gall bladder (negative for stones) saw back dr for the pain. Had some herniating discs (I was ER nurse lifting patients so it was natural). Finally took the initiative and called a neurologist that I worked with at another hospital, and after tests he diagnosed me with MS. I was stable on the treatment until 2017. Paralysis from waist down. Neuro referred me to a specialist who dealt more with auto immune. After going through my history, he picked up on the hiccuping and immediately ordered a blood test called aquaporine and I had the antibody that was positive for NMOSD (it mimics MS but is more rare). Moral of story is to be proactive when it comes to your health care. Demand answers and referrals. God bless everyone
That's an incredible diagnosis journey and I'm so glad your neurologist referred you to the other specialist! That shows great advocacy on both you and your neurologist! How's your treatment going now that you're properly diagnosed?
Wow
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Your story most certainly highlights the need to keep pushing to get checked out for symptoms that might not align with an 'assigned' diagnosis! Good job!Thank you for sharing about your diagnostic journey!
Gina (Team Member)
For others who also might not know much about this particular rare disease,
here is a link with info:https://www.ncbi.nlm.nih.gov/books/NBK572108/#:~:text=Neuromyelitis%20optica%20spectrum%20disorder%20(NMOSD)%20is%20an%20uncommon%20yet%20impactful,challenges%20for%20diagnosis%20and%20management.
