What To Know About Living With NMO

Last updated: November 2022

I remember when I was first diagnosed with NMO after I got over the initial devastation, the first thing I did was look up what it was and its symptoms. Knowing that this was a disease that I would live with for the rest of my life, naturally, I needed to know how this disease was going to affect me. Needless to say, I was shocked by what I found. It's been more than 2 years since I was diagnosed, and I've learned so much since then. NMO is rare. This isn't a disease that comes with a manual. Let's talk about what they won't tell you living with NMO.

Outdated NMO research

Before I go any further, I have to say that the lifespan of NMO is not 5 years! It's quite surprising that after all these years that this information is still outdated on the web. You ask anyone living with NMO that they were likely terrified when they initially saw this, and we’ve ALL experienced this feeling. It's scary! Most of us living with this disease have a long life span. Not saying that the quality of life is great, but we certainly have more than 5 years. Some attacks hit harder for some people, causing many underlying health issues. While there is a protocol to treat us after an attack, the outlook doesn’t look great in those cases. Ultimately if you think you have an attack seek immediate treatment to avoid severe and permanent disability. Thus, increasing your chances of a long, fruitful life.

Expect to put in some work

As I'm sure you have heard many times before, we all have similarities, but no 2 people living with NMO are the same. The internet tells you all the basic information but let me tell you; it’s complicated. After living with this disease for over 2 years, I have experienced so many symptoms that are nowhere to be found in my research. You can certainly expect to feel like a medical professional living with NMO. I personally find myself doing so much research on my symptoms to figure out what could be going on. Most of the time, it feels like a wild goose chase! Even worse, most doctors don't know anything either but will almost never admit it. Find you a doctor that specializes in MS and in NMO, otherwise, you'll be spending a lot of time frustrated and untreated. If you ever need to go to the ER, be prepared! Access to NMO materials will help you better advocate for yourself to ensure you receive the appropriate treatment.

NMO symptoms and issues

This may not be the complete list of symptoms you can experience living within NMO however you can expect some of the following:

BlindnessNeuropathic painParalysis
Muscle WeaknessFatigueBowel dysfunction
NeuropathyBladder dysfunctionAppetite issues
GI issuesVision IssuesHeadache
Food intolerancesRisk of other autoimmune diseases“MS Hug”
Gait and mobility issuesTemperature sensitivitySwelling
Mental illnessSleep apnea Lhermitte sign
Brain FogCognitive dysfunctionChronic Pain
ParesthesiaNumbnessLesions

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