First NMOSD Symptoms

Diagnosing 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 the question, "What was your first symptom of NMO?" Community members shared insights into their early signs and symptoms.

First NMOSD symptoms

Tingling sensation

Several respondents shared that they felt tingling first in their feet or hands. For most, these initial symptoms were not worrisome, as they were unfamiliar with NMOSD.

"Two years ago, my first symptom was tingling. My foot started tingling as if going to sleep, but it didn’t feel like that. It went away in a day or maybe two, so I thought nothing of it. A few months later it came back in both feet, but didn’t last long, so I blew it off."

“My first symptom was a strange tingling sensation in my lower back and legs. When I went to the doctor, he ignored me, stating that I needed rest because I ran around too much. So before I knew it, within a month, I lost one eye and then the following 4 months I had paresis; 95 percent of my body a little lower than my waist went completely numb.”

MS hug

Some respondents shared symptoms similar to those of multiple sclerosis (MS). One symptom they described was the MS hug. The MS hug is tightening sensation around the midsection. Sometimes, it occurs around the entire stomach or chest area. Other times, it occurs on only 1 side of the midsection.¹

It can be difficult to breathe when the MS hug strikes. Each person experiences it differently.¹

"I had the MS hug really badly at first, but it lessened within the first year. It’s a really good warning sign for me that I'm overheated or pushing myself too much – it comes back with a vengeance!"

“I wish more doctors were required to know warning signs for rare diseases or even just MS, which might lead them to NMO.”

Headache with vision loss

Another symptom respondents mentioned was a severe headache with vision loss. Vision loss often affected only 1 eye, but it could affect either eye.

"My first symptom was an awful headache for 3 days. Then I lost some of my vision in my right eye."

"My first symptom was the eyeball headache. That deep-rooted pain in the back of my eyes was so unbearable. Shortly after, I lost my vision."

Other symptoms

Other respondents mentioned additional symptoms they experienced with NMOSD. These included loss of smell, weakness in the extremities, and gastrointestinal upset.

"My first symptom was loss of smell."

"My first symptoms were weakness of the right upper limb and inability to write."

"For me, the first symptoms were extreme nausea, vomiting, and hiccuping that lasted for months. Then a couple of years later, the same thing along with vision problems."

"Minor symptoms are vibrating spine, weird feeling in legs which feel thick, slight balance issues every once in a while, which my vibration plate has really helped improve, MS band/hug which has lessened considerably, shoulder/neck/upper arm pain sometimes, burning/sensitive upper arm sometimes, and tingly hands and feet."

Thank you

We appreciate everyone who shared their first NMOSD symptoms. Learning from one another helps everyone feel supported. Please continue to share insights and experiences with early signs of NMOSD!

What were you or your loved one's first NMOSD symptoms?