What I Learned From My Recent RelapseMy official journey with NMOSD began in November 2021 when I was told I am AQP4+. Over 3 years, I dealt with side effects of my medicine, being constantly in... By Kshirja Singh4 min readBookmark for laterReactions0reactionsComments0 comments
Abnormal Sensations With NMOSDPeople with neuromyelitis optica spectrum disorder (NMOSD or NMO) are forced to navigate a variety of challenging symptoms: vision loss, headaches, weakness or paralysis, temperature sensitivity, bowel and bladder issues... By Neuromyelitis-Optica.net Team1 min readBookmark for laterReactions0reactionsComments0 comments
My Neurogenic BladderOne of my very first symptoms before getting diagnosed with NMO was having problems with my bladder. After experiencing many embarrassing moments with my bladder, getting pelvic floor therapy, and... By Aldelly V.2 min readBookmark for laterReactions0reactionsComments0 comments
You Don't Look SickI was traveling when a wave of NMOSD spasms hit me. I was standing when this happened, and I politely asked one of the passengers who was sitting in the... By Kshirja Singh3 min readBookmark for laterReactions0reactionsComments3 comments
How Being A Carer With NMO Changed MeMy mum is a carer. She has been a carer for around 4 years. She was also my carer during my NMO attack and recovery. She is a wonderful woman... By Haleemah Sarwar2 min readBookmark for laterReactions0reactionsComments0 comments
Living With A Suprapubic Catheter and NMODeciding to get a suprapubic catheter for a wheelchair-bound person like myself, with my neurogenic bladder with severe UTIs, was a no-brainer. I had been dealing with a severe and... By Aldelly V.3 min readBookmark for laterReactions0reactionsComments0 comments
Is NMO Causing My Thyroid Issues?Writing has been a huge help over the last few years with NMO. It's been a great way to share my personal experience with a disease that many know nothing... By Dan Marino3 min readBookmark for laterReactions0reactionsComments0 comments
Financial Struggles with NMOSDI was watching an interview and this lady said, “If you have money you can afford to fall sick." And I could not agree more with this statement. I mean... By Kshirja Singh4 min readBookmark for laterReactions0reactionsComments1 comments
Support One Another: Relationships With NMOSDLiving with neuromyelitis optica spectrum disorder (NMOSD) comes with challenges, both physical and emotional. One major challenge of living with a rare disease is finding a "new normal" when it... By Neuromyelitis-Optica.net Team1 min readBookmark for laterReactions0reactionsComments0 comments
My Spinal Tap ProcedureI laid on a flatbed in a curled baby fetal position and was told by the anesthesiologist to try and stay still as he prepped my back for a spinal... By Aldelly V.3 min readBookmark for laterReactions0reactionsComments1 comments
Taking Back My VoiceI worked so hard last year coming to terms with my bad eye, and trying to make the best out of life with NMO. I continued down a path of... By Dan Marino3 min readBookmark for laterReactions0reactionsComments0 comments
Navigation and Accessibility: NMOSD ObstaclesNMOSD came as a real eye-opener for me holistically. I used to see specially-abled people walk by, unaware of the challenges they must face in a zillion ways. Now I... By Kshirja Singh4 min readBookmark for laterReactions0reactionsComments0 comments
Join the Conversation: Physical Therapy for NMOSDPeople with neuromyelitis optica spectrum disorder (NMOSD) often experience a loss of mobility. For some, physical therapy can help them regain mobility and everyday functioning. This can have varying results... By Neuromyelitis-Optica.net Team1 min readBookmark for laterReactions0reactionsComments0 comments
Mastering Stress: A Personal Journey to Mental and Physical WellnessI've learned during my journey with NMO that stress can cause a lot of negative reactions in my body. This can have an impact on mental health, but also result... By Haleemah Sarwar3 min readBookmark for laterReactions0reactionsComments0 comments
The Side Effects of Chronic IllnessIt's been 2 years and 7 months since I was officially diagnosed as AQP4+. And 3 years since I became partially blind. But NMOSD (as I always mention) did not... By Kshirja Singh4 min readBookmark for laterReactions0reactionsComments2 comments
Would A Spinal Tap Give Me Answers?It was the year 2016, months before my official NMOSD diagnosis, and I was limp walking around the hospital hallways to get to my very first neurology appointment. The first... By Aldelly V.3 min readBookmark for laterReactions0reactionsComments0 comments
Misdiagnosed With My Second AttackPicture it: New York, 2007. I was 18 and felt indestructible, or so I thought I was. I had my first NMO attack less than a year prior but shrugged... By Dan Marino2 min readBookmark for laterReactions0reactionsComments0 comments
NMOSD Helped Me Come OutBeing diagnosed with a rare disease, NMOSD, helped me come out. It’s June so that means it’s pride month, and during pride month we take the time to celebrate those... By Avery Allmond3 min readBookmark for laterReactions0reactionsComments0 comments
Blossom's Magic: How My Cat Helped Me Conquer DepressionMany in the NMO community can relate to the feeling of not being understood by others around you. I isolated myself from the world for a while, it’s been a... By Haleemah Sarwar3 min readBookmark for laterReactions0reactionsComments0 comments
Pins and NeedlesIt was 3 months after I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD). I was 95 percent paralyzed from the waist down since October 2021. But thanks to regular... By Kshirja Singh4 min readBookmark for laterReactions0reactionsComments3 comments