Helping Sally Russo fight a nameless disease

In the last year, Sally Russo has been hospitalized 26 times.

Scarring on the inside of her elbows shows the damage of how many times her veins have blown out from being constantly pumped full of medication.

If asked, she can tell you that her problems stem from living a decade with undiagnosed Lyme disease. But her current medical condition remains nameless as doctors have yet to identify what she’s battling.

In an effort to help Russo’s fight against this nameless illness, her friends have banded together to hold a fundraising golf tournament for her on Saturday, Aug. 12, to help cover the cost of Russo’s medical treatments.

“I can’t believe people would do that,” Russo said. “I was floored. I’ll be forever grateful for them to do that.”

Although Russo has been battling this unnamed illness for nearly 16 years, the last year-and-one-half years have been the worst yet, she said.

“I’ve never wanted more in my life to have a diagnosis,” Russo said. “I’m a really resilient person. I’m a fighter, but it’s hard to fight against something when I don’t know what it is.”

One specialist told her it’s molecular mimicry. Another said she may have a dystonia in her brain. Most tell her they’ve never seen anything like it in their life.

For Russo, life is a revolving door of constant pain and seizure-like episodes.

“I don’t remember the last time I had a pain-free day,” Russo said.

It all started when she was in her 20s. She was told she had Lou Gehrig's Disease, multiple sclerosis, Parkinson’s Disease, lupus, rheumatoid arthritis and other neuromuscular problems. After several years of incorrect diagnosis, Russo was told she had stage four Lyme disease, which had crossed the blood brain barrier causing neuromuscular damage.

That’s when the episodes started.

“It’s like someone comes in a flips a switch in your brain,” Russo said.

An episode consists of muscular spasms similar to a seizure. The difference is that Russo never loses consciousness during an episode, and a single episode can last longer than 10 hours. The longest she ever endured was 26 hours.

“You have no control over what your body is doing,” She said. “It would be fantastic if it would knock me out.”

On average, she’ll have up to five episodes - which she likens to tearing chicken meat off the bone - in a week.

“It feels like somebody is pulling my muscles away from the bone,” she said.

Recently, the spasms have begun affecting her heart. Already, she’s survived 4 cardiac arrests. A cardiologist has told her that she’s a ticking time bomb. If they can’t find some kind of solution for her soon, this nameless condition will kill her, he told her.

“That’s always in the back of my head now,” she said. “It’s creeped into the room.” 

Last week, she tried her first round of intravenous immunoglobulin treatment - an IV treatment typically used for autoimmune diseases.

“If it works, it’d be a miracle,” she said.

If this treatment doesn’t work, she’ll try a stem cell transplant.

“At this point, I’d try anything,” Russo said.

Despite the daily struggle of dealing with the pain, Russo still works two days a week as a bartender at Forest Lake Golf Club. Sitting around at home all day is not an option, she said.

She has dreams of starting her own business and one day owning her own house.

“I want to get healthy to be able to work more and life my life,” Russo said. “At 38, I don’t want to be stuck in bed.”

And on the days when her pain is manageable, she often goes out with friends or finds something fun to do.

“When you get a moment when you feel good, you tend to go overboard because you are making up for lost time,” she said. 

Contact Brittany Gaines at [email protected].