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Amanda’s NMO Story – Physical Strength Gets You to the Start Line; Mental Strength Gets You to the Finish

Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO

Back in 2013 and 2014, I completed two 100km walks to raise money for Oxfam – something I am so proud to have done! BUT in 2016, when I tried to do it a third time, I trained right up to walking 50km in a day however, I was suddenly unable to sleep, to stay awake for nights on end, and ended up losing grip on reality. I ended up in the Henry Bennett Centre at our local hospital – a local mental health facility. I was diagnosed with psychosis and after a two-week stay and a variety of tests, I was discharged with anti-psychotic medication and told that my psychosis was brought on due to fatigue. I recovered fairly quickly, which seemed to confuse the doctors a little and after a year and 20kg of weight gain, I was finally off the medication!

Fast forward one year and feeling much better, I decided to walk another 50km! I underwent all of the training and completed the walk in March 2018 (with MUCH more difficulty than I would have expected!). In May 2018, I began experiencing vision issues and every morning, I’d wake up with a bright red, hot face. I visited the optometrist who told me my vision was fine! (WHAAAT?!)

After a week or two of zero improvement, I went to the doctor who told me that I have dry eyes and sent me home with eye drops. A week later still with no improvement, I went back and told him I didn’t think it was dry eyes and he referred me to the eye clinic. A month later, I finally had my appointment. He did various tests and concluded that it is likely optic neuritis (which can be linked to multiple sclerosis) and sent me straight to the emergency department. They tested my reactions and booked me for testing as an outpatient.

One month later, I had an MRI. A month after that, a visual evoked potential test (EP) for MS, a visual field test (which showed very obvious left field vision loss), and finally, a lumbar puncture. During this time, I also experienced urinary retention. I had an ultrasound which showed a 5cm angiomyolipoma in my left kidney after which an urgent CT was ordered and came back clear. Meanwhile, bladder issues continued…

In December, I was finally diagnosed with NMOSD, tested positive for NMDA antibodies (explaining the psychosis finally!), and also positive to MOG and ogliclonal bands. I started on CellCept and Prednisone. My vision improved greatly as did my bladder issues after starting the medication, but I began experiencing tingling, pain around my chest and middle, my back, and some numbness, shooting and tingling in my arms and fingers, and weakness in my arms and legs. I was asked to come into hospital in May, where another MRI was done, but with no major changes. I was reluctantly given 1,000mg of Prednisone intravenously for five days and continued treatment.

My vision is still okay (apart from a blind spot in my left eye that I don’t think will ever improve) and my bladder seems to be functioning okay for now for which, I am grateful! But the almost daily discomfort, fatigue and weakness continues. The things I used to be able to do so easily, like shopping, staying up past 10 PM, cleaning my house, and especially walking, are now a struggle some days, BUT I’m grateful for everything that has gone on over the last few years.

During my most recent appointment with my neurologist, he discussed the possibility of my condition being GFAP (Glial Fibrillary Acid Protein) so I’ve had a blood test for this and will possibly need another lumbar puncture and/or evoked potential test.

Although hard in many ways, illness enabled me to be more grateful than ever for my family, friends and workmates who have been incredibly supportive. I’m grateful that I can see well enough to drive again, that I am able to still work full time, and that through it all, it has made me a stronger person. I try every day to stay positive despite how I feel.

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