It’s estimated at least 2 million people, world wide, have Multiple Sclerosis.
More women than men are affected.
The average age of on set is 35.
But there’s another disease of the nervous system, much more rare and often mistaken for MS, it’s called NMO.
Now, local patients are helping in the effort to find a cure.
“And I just kept coming in saying, I think this is strange. My arms feel dead and I did have a pain behind my eye. A horrible pain like a stabbing pain and I also had that down my spine,” said study participant Jody McGarry
Symptoms very different from the paralysis on one side of her body in 2006, that had doctor’s diagnosis her with Multiple Sclerosis.
Like Jodie, Michelle’s symptoms also got her a diagnosis of M.S. And also like Michelle, she had other symptoms.
“I had my left arm was not moving at all and I was dragging my left foot,” she said.
In the end neither women has M.S.
Jodie’s been diagnosed with N.M.O. Neuromyelitis Optica – and that may be what Michelle is also suffering from.
Only 1 in 100 MS patients have N.M.O. and because it’s so rare, getting the right diagnosis can be difficult.
“And then it can mimic MS, ah, quite, quite well. There’s a blood test that’s specific to NMO but it’s only positive about 70% of the time,” said Dr. Keith Edwards.
There are two, other indicators of this central nervous system disorder: patients don’t respond well to MS drugs – and they may develop other disorders like Sjogren’s Disease or Rheumatoid Arthritis.
Samuel Hughes and Morgan McCreary are hoping to keep those strides, coming.
Research coordinators with the Accelerated Cure project out of the University of Texas Southwestern Medical Center, they’re signing up research participants like Jodie and Michelle who agree to give blood samples to be studied and stored – available for researchers studying rare neurological disorders like NMO.
“A lot of it is bio marker research looking to see what is in the system of the patients that make them look different from other people,” said Samuel.
Finding better treatments or even a cure can take years and may not come about soon enough for Michelle and Jodie – but that’s okay. They’re looking at the bigger picture.
“So that I can help other people in the future if they have this,” Michelle says.