The NMO Community We've Been Waiting for is Here
A vision problem is often the first noticeable symptom of MS. The same is true of NMO spectrum disorder. Both disorders can cause acute (chronic) spinal cord attacks, with weakness, numbness/pain, and bladder issues.
In the past, doctors thought NMO was a type of MS and misdiagnosis continues to be a common occurrence. Both NMO and MS attack the myelin, the outer protective coating on nerve cells of the brain, spine, and eye. Because of this, both diseases share similarities that can make diagnosis a challenge.
A new community awaits...
For far too long, many who contend with NMO, whether their diagnosis was known or unknown to them, have done so lacking the resources they deserve. They've fought against systems that doubt them. They've battled debilitating and terrifying symptoms, all while too often being dismissed, overlooked, and contested by those who are meant to help and heal them.
With the launch of our sister site, Neuromyelitis-Optica.net, that begins to change.
Who we are?
Neuromyelitis-Optica.net is an online community created by, for, and with you. It's our intention to craft a vibrant and resourceful space where you can come to seek and give information, support, camaraderie, and so much more.
The content you'll see published was created in large part by our advocates, who are either living with NMO or whose lives are touched by NMO. We also publish content created by our shared expert editorial team, who analyze and interpret important clinical information to make it easier for us to understand.
If you or a loved one are interested in joining the newest NMO community, you'll have the opportunity to interact with other members, ask questions, offer support, submit your own stories, contribute to forums, and more.
Let's talk about our shared goals
Let's hit this part home: this community was created with you in mind. Together, we will actively work to make information, support, and resources for folks living with NMO more accessible. We'll also work to influence the NMO space in such a way that the lives of our community members, both present and future, are improved.
Let's get diagnosing NMO right
It's an inconvenient truth: NMO can be difficult to diagnose. The symptoms associated with the onset of NMO can be broadly interpreted, and too often written off as being relatively innocuous. These include eye pain, headache, neck or back pain, fever, and being sensitive to the touch.
Anecdotally, nearly everyone we've spoken with as we launched this community has journeyed down a long and winding road that, perhaps years later, led to an accurate diagnosis. Too many are initially diagnosed with and treated for multiple sclerosis, which can actually be harmful to someone living with NMO. Others first felt dizzy, which they identified as vertigo, or suddenly woke up blind, which was too often attributed to comorbidities like diabetes.
Let's raise awareness
The first step towards changing the course of NMO diagnosis and treatment is raising awareness. One of our goals is to help lift your voices in concert with the chorus of many who work tirelessly to dispel mistruths about NMO and bring the facts to light. Awareness needs to be raised on all parts: on the part of patients, on the part of health care providers, and on the part of the world at large.
Let's be an enduring resource
We're here to help. Whether you're looking to arm yourself with factual information, seek or offer support, access resources, or educate others, we're creating a community that will enable you to do all that and more. As time goes on, and as more people contribute their stories, perspectives, and questions, our community will become increasingly robust and substantial. We're building a community for today and tomorrow.
The bottom line?
An online community made for, by, and with you, someone whose life is touched by NMO is finally here! We're so excited to be able to welcome you!
Do you live with any comorbidities aside from MS?