Telling My NMO Story Can Be PainfulThere was a point in my health journey when it’s just bothersome to constantly get questions about my neuromyelitis optica (NMO) diagnosis. While I love advocating for NMO and sharing... By Aldelly V.2 min readBookmark for laterReactions 0 reactions Comments0 comments
First NMOSD SymptomsDiagnosing neuromyelitis optica spectrum disorder (NMOSD) can be very challenging. Symptoms of rare diseases often go overlooked, and many doctors are unfamiliar with signs of NMOSD. The Neuromyelitis-Optica.net community answered... By Neuromyelitis-Optica.net Team2 min readBookmark for laterReactions 0 reactions Comments0 comments
Filter Out the NegativeThere is a saying about tough times: you get to see the true colors of everyone around you. I had seen tough times, and I had seen how people reacted... By Kshirja Singh3 min readBookmark for laterReactions 0 reactions Comments0 comments
The Physical and Emotional Toll of SteroidsMy last neuromyelitis optica (NMO) attack was roughly eight years ago. It was my most terrifying attack yet. At that point my right eye suffered a lot from an ignored... By Dan Marino3 min readBookmark for laterReactions 0 reactions Comments0 comments
Parenting with NMOSDThe hardest situation to deal with is a chronic disease like neuromyelitis optica spectrum disorder (NMOSD) that continues to debilitate you, to the point of not caring who is watching... By Aldelly V.2 min readBookmark for laterReactions 0 reactions Comments2 comments
My Rituxan ExperienceI want to share a piece of my journey with you, a journey that has been significantly altered by one little bottle of Rituxan. That bottle might not look like... By Helen Lear-Grant3 min readBookmark for laterReactions 0 reactions Comments0 comments
NMOSD Made Me Say Goodbye to High HeelsEvery time I’m asked at a physical therapy consult, “What’s your goal?” my answer is almost always to walk - in high heels. Before my neuromyelitis optica spectrum disorder (NMOSD)... By Aldelly V.3 min readBookmark for laterReactions 0 reactions Comments0 comments
I Miss the Joy of RunningBefore neuromyelitis optica spectrum disorder (NMOSD), my whole life I was an athlete. When I got to high school, I decided I was going to play basketball since the basketball... By Avery Allmond2 min readBookmark for laterReactions 0 reactions Comments1 comments
Is It An NMO Relapse? New SymptomsA few months ago, I decided to go off my nerve painkillers because I was getting recurrent urinary tract infections (UTIs) and was trying to find the culprit. However, they... By Haleemah Sarwar2 min readBookmark for laterReactions 0 reactions Comments0 comments
Tired of the NMO FrustrationsNeuromyelitis optica (NMO) last played with my vision eight long years ago. Still feels like just yesterday. Some days I forget I have vision issues, and some days I feel... By Dan Marino3 min readBookmark for laterReactions 0 reactions Comments0 comments
Dealing with the Rarest of RareSo here I was on the 5th the day of my ICU stay, waiting for some news on the numbers of tests being run on me. I was admitted as... By Kshirja Singh4 min readBookmark for laterReactions 0 reactions Comments0 comments
Getting Plasmapheresis For NMOPlasmapheresis is a complex therapy which I’ve undergone four times in my journey with neuromyelitis optica (NMO). Every time I’ve completed a treatment my results are phenomenal. But what is... By Aldelly V.3 min readBookmark for laterReactions 0 reactions Comments5 comments
I Feel Alone with a Rare DiseaseLiving with a rare disease like neuromyelitis optica (NMO) has put me in a position to feel alone. When I was first diagnosed with a rare disease, I never knew... By Avery Allmond2 min readBookmark for laterReactions 0 reactions Comments0 comments
Prioritizing My HealthBeing back in New York is almost like a gift. It just feels so right. But also being back means I need to start making some big changes. I used... By Dan Marino2 min readBookmark for laterReactions 0 reactions Comments0 comments
Feeling Discouraged with Physical Therapy ProgressThrough my journey with neuromyelitis optica (NMO), there have been highs and lows. For me it has been 10 years since I have been in a wheelchair due to my... By Teaira-Daniels4 min readBookmark for laterReactions 0 reactions Comments0 comments
Embracing Change with Neuromyelitis OpticaI've certainly had my share of unexpected twists and turns since my diagnosis with neuromyelitis optica (NMO). This autoimmune disorder shook up my life plans, forcing me to adapt to... By Helen Lear-Grant3 min readBookmark for laterReactions 0 reactions Comments0 comments
Record Your JourneyI record everything. Since the day I was diagnosed with neuromyelitis optica (NMO), I have always felt the need to record and take pictures of my journey. From the symptoms... By Avery Allmond2 min readBookmark for laterReactions 0 reactions Comments0 comments
Medical Gaslighting and MeEver since I was a child, my life has been nothing but a comedy of medical errors. I am one of those people who would not catch the normal flu... By Kshirja Singh3 min readBookmark for laterReactions 0 reactions Comments2 comments
A Toast To CaregiversIt’s been a long journey with neuromyelitis optica (NMO). I’ve had to learn how to better help my health and learn new ways to do things. I’ve also had to... By Dan Marino2 min readBookmark for laterReactions 0 reactions Comments0 comments
My First Shopping Experience In My WheelchairConfidence is the most beautiful aura one can wear in public. The feeling of wearing an invisible security blanket around yourself and loving every part of your being is priceless... By Aldelly V.2 min readBookmark for laterReactions 0 reactions Comments0 comments