Joe Gianforte first experienced symptoms in 1987 when he was a sophomore at Northern Illinois University. “I was having headaches, my eyes hurt and I had double vision,” recalls Gianforte. “They put me through an unbelievable amount of tests, but said ‘It’s not an eye thing. You need to go see a neurologist.’”
Following more testing, Gianforte was diagnosed with multiple sclerosis (MS), an autoimmune disease in which the body attacks the lining of the nerves. The disease can causes problems with vision, balance, dizziness, memory or bladder function, muscle weakness, and sensory changes such as numbness or tingling.
And so began Gianforte’s nearly 30-year battle with MS, which has been a constant search for the right combination of conventional treatments and new, innovative options to relieve symptoms and slow progression of the disease.
Most people with MS have recurring flare-ups of symptoms. But the pattern of the disease varies widely. Some people never develop serious symptoms, while others face symptoms that progress rapidly. Early treatment provides the best chance of avoiding disability later.
With Gianforte during the ups and downs over the last 18 years or so has been Henry Echiverri, MD, a board certified neurologist and medical director of the Edward-Elmhurst Health MS Clinic in Warrenville.
“He’s been wonderful to work with,” says Gianforte, now 48 years old. “He’s very accessible. After I got an MRI (in March 2016), he called me later the same day to go over it. It was great. He’s a busy guy and sure enough, he had time to call me.”
“Running an MS practice means a long-term relationship with the patient,” says Dr. Echiverri. “Being accessible and responsive to patient’s needs is important 24/7. I become their friend, brother or relative. Even with strong family support, patients can feel alone with this disease. They need a confidante of some sort.”
“I have 100 percent faith in Dr. Echiverri,” says Gianforte. “Whatever he feels would be the best thing to do, I always do. I never doubt it.”
That faith has paid off with the effectiveness of his recent treatment, a chemotherapy drug called Cytoxan®, something Gianforte says you wouldn’t think of to deal with MS. That’s where his trust in Dr. Echiverri comes into play.
“Joe’s latest MRI showed dramatic improvement in the lesions on the nerves that cause MS,” says Dr. Echiverri. “His relapses have come farther apart and he hasn’t had a relapse this year.”
At this stage of his MS, Gianforte’s biggest challenge is leg strength. Due to numbness, he says he hasn’t felt the bottom of his feet in 15 to 20 years, which makes it difficult to perform activities that most people take for granted.
“When you’re taking a shower, it’s difficult. Just walking to the car, getting in the car. I’m able to drive, but I don’t. My fiancée’ Genee (Minutillo) usually drives,” he says. “Any other normal person wouldn’t worry about those things. It’s a new way to live. You just learn to deal with certain things.”
He’s had that approach since he learned he had MS. “I think that’s the outlook I’ve always had — just be positive about everything. (MS) never changed me.”
“Having a fighting and positive attitude goes a long way in winning the fight against this disease,” says Dr. Echiverri. “It goes to show that a healthy mind does influence our immune system.”
Edward-Elmhurst’s MS Clinic has been recognized as a Partner in MS Care by the National MS Society. Learn more about our expert diagnosis and treatment for MS.
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