For 10 years, Stuart Schlossman suffered from symptoms that doctors couldn't pin to a single disease: fatigue, pain, memory problems, vertigo, dizziness. Finally in 1998, a doctor finally told him what he's been waiting for: Multiple Sclerosis.
"I may have heard of it, but it's not something that stuck," Schlossman said. "There wasn't much knowledge about it among anybody I knew either."
Joining a support group, he found that his web savvy was helpful to others and he would pass along links and article he'd read about the disease. Soon, the mailing list exploded to Stu'sViewsandMSNews.org in 2008. Today, patients and healthcare professionals around the world follow him on Twitter,Facebook, a monthly radio show, Webinars, podcasts and live seminars.
What diagnoses did you hear before MS?
I was diagnosed by a cardiologist that I had anxiety disorder and it really had nothing to do with that. At one time somebody had made mention of a brain tumor, which many people with MS are told it may be a brain tumor because of all the headaches.
I was traveling outside the country a lot, I wasn't feeling well, I had to cut trips short and come back early. I was told that by one doctor that a lot of my vertigo and dizziness was caused by all my flying, all the up and down. It was ridiculous.
What did you think of the diagnosis?
I was relieved because somebody told me what was wrong. He told us what it was, but he didn't want to do any treatments. Back in the day, there was a time when a lot of neurologists just diagnosed you with MS but then they didn't want to treat you because they said that the side effects of the drugs were worse than the symptoms you were going through. They would rather see you get worse than put you on something.
How did your online presence start?
After I was diagnosed I was always on the Internet to try to find out what was going on and I got involved with a support group in Miami Dade. Most of the people there said, "OK, this is what we're doing this week," but they didn't know what was wrong with them and their caretakers didn't know. I found that I needed to provide information I always got on the Internet. I was I was finding out about pain, about fatigue, optic neurosis. My email list started out with 10 people; it now exceeds 15,000 worldwide.
What does Stu's Views and MS News do?
We provide information and education via the Internet and via live seminars. It became a global thing, there's 12,000 people that follow me on Facebook. I've got thousands of people that pick up the feeds that go to Twitter.
It's become a major need. I find that when we do education programs in the smaller towns in the state of Florida, the people really don't know… Information is not reaching rural America and that's something that I want to do: to give the information to caregivers to rural America, to family, to friends.
What other information outlets do you have?
We average about 1,200 listeners on blog talk radio. It's once a month on MS Unplugged called Stu MS Radio. I do speaking engagements also about patient advocacy and quality of life. The final summation all the time of what I talk about, what I say is that I was once very arrogant, obnoxious, arrogant salesperson and now I'm an arrogant, obnoxious humanitarian. And that's what I feel I've become all the time. Where I didn't really care about what people did in the past, now I find I care too much.
What advice do you have for others with MS?
The patient knows what's going on with themselves – don't leave it up to a health professional to know what's going on, don't leave it up to a family member to tell the doctor what's wrong. Always go in with a list.
People really need to be proactive with themselves it's not even about MS. It's about life. Life is too short for people to sit around and waiting for a cure for something. They've got to be able to get out and live their lives.
What's your goal?
We're hoping to go nationwide…. We're global for blog talk radio, the website, the blog, and that's all global… but we want to do live seminars in other states. We want to be able to grow.
I am a volunteer and it just helps me to fill my day and to feel complete as a person. I want to do able to say, "I did something in life, I did something different." I can even have on my tombstone that I'm a humanitarian, an obnoxious humanitarian.