White House Crasher Michaele Salahi Reveals Multiple Sclerosis

Debilitating Disease on verge of FDA approval for "disease modifying" treatment.

BySusan Donaldson James
September 15, 2010, 2:00 PM

Sept. 15, 2010— -- The so-called White House gate-crasher Michaele Salahi was only 28 when she noticed her legs were giving out when she went swimming in her backyard Virginia pool.

At first, doctors thought it was pinched nerve. They later diagnosed multiple sclerosis. She was bedridden for eight months.

Salahi, now 44 and a rising reality star on Bravo's "The Real Housewives of D.C.," revealed this week how she has struggled with the disease.

She said the sometimes-debilitating symptoms struck her the night she and her husband Tareq caused such a fracas at that infamous White House state dinner.

"Being a patient makes you more aware," said Salahi. "They make fun of me on the show and say I am fake and full of it with my happy hugs, but I generally am happy," she said.

"But there was a time when I couldn't get out of a bed and walk," she said. "My family had to feed me soup because I couldn't even lift my arm. It scares you. But I live for today. I am all about being positive and they won't roll over me."

Salahi appeared earlier today on television's "Fox and Friends" with Diane Dimond, the investigative reporter whose book, "Cirque Du Salahi," hits bookstores Sept. 15.

"Diane is someone I trusted," said Salahi, who cried and turned to Dimond to refute allegations from her reality co-stars that she was anorexic.

"It's been stressful for her," said Dimond.

For 15 years, Salahi said she had volunteered for the Washington office of the National Multiple Sclerosis Society.

"They didn't even know I had it," she said. "They said, 'wow, your husband must have it or a friend.' I said, 'It's someone I care about very much. I have lived with it for 17 years."

About 400,000 American have multiple sclerosis, about twice as many women as men. It typically strikes between the ages of 20 and 50. It is often called the "You look so good" disease because its symptoms are often unnoticeable to others, according to NMSS spokesman Arney Rosenblat.

"Weight loss is not a typical symptom," said Rosenblat. "However, if you are on medication or you have depression or fatigue, you could have appetite issues. If you know someone with MS, you know its hallmark in unpredictability."

The same could be said of Salahi, who has been nicknamed "the butterfly" for the way in which she flits from one scene to the next in her personal and professional life.

But she said her journey with MS has been the biggest challenge so far.

MS is a chronic and sometimes disabling disease that is thought to be autoimmune in origin, attacking the myelin coating around nerve fibers in the central nervous system. It affects the brain, the eyes and the spinal cord as inflammation and scarring interfere with the transmission of signals along those nerve fibers.

"There are a wide variety of symptoms that can vary from one person to the next," said Kim Calder, a clinical psychologist and vice president of NMSS's professional resource center at the National Multiple Sclerosis Society.

"One person has vision problems or sensory changes and tingles or numbness in their arm or leg," she said. "And somebody else can go on to have cognitive impairment and walking difficulties. Most people have some of these symptoms, but not all of them."

Michaele Salahi Says She Has MS

Advocates say they are on the verge of new disease-modifying treatment -- the first oral medications that may help slow the progress of the disease. The FDA is scheduled to announce Monday whether it approves the use of the medication Gilenya (fingolimod) for first-line treatment for relapsing MS.

Studies have shown a 54 percent reduction in relapses, according to Calder. But Gilenya carries significant risks to lung function and side effects like macular edema and changes in heart function. Calder said doctors and their patients will have to weigh the risks against benefits.

About seven injectable medications are now used to treat the disease, as well as corticosteroids, symptom management and psycho-social therapy.

Salahi said she has the "relapsing-remitting" form of MS, with periods of inflammation when new symptoms appear or old symptoms suddenly worsen. As the inflammation resolves, symptoms can disappear.

"The most important thing is it's really an unpredictable disease," she said. "Most people do not become severely disabled. Many will have difficulty walking or have balance impairment or fatigue, but they can remain on their feet and be mobile with the use of mobility devices."

"The notion that every person with MS requires a wheelchair is not the case," said Calder.

Salahi said she first knew something was wrong that day in the pool.

She had been working as a model -- the face to the "I Love Virginia" tourism campaign -- and was a make-up artist to high-profile political women like Nancy Pelosi, Lady Bird Johnson and her daughter Linda Robb.

"It was a hot day, but I had grown up in Florida," she said. "I thought I would lay out for a minutes and I started not to feel well. It was almost like a prickly heat in my legs and a tingly feeling. Then I jumped back into the pool and felt all over weakness and pain and pins like your hand was going over nails."

"I am kind of a sensitive person and I didn't want to cry and be afraid, but I was in my prime and they are thinking something's wrong with me," she said.

Salahi insists she is not suffering from anorexia and that earlier photos with a fuller face were taken when she was on corticosteroids for MS.

"I am naturally skinny and when I was diagnosed in my 20s, I became more of a health nut and it wasn't that I was staying thin, I want to maintain my weight as I get older," she said. "All the MS books say that it's easier to deal with symptoms and balance and getting around. That's important to me."

Her biographer agreed.

"What I learned in my investigation of MS is that it is wise to be lean," said Dimond. "She is not anorexic. I lived with her in Virginia and she eats all day -- Hershey's kisses and cookies and last night she had a half chicken and a mound of mashed potatoes. She is lucky, because she has a lean body mass."

Michaele Salahi Denies Anorexia Rumors

Salahi said dealing with the MS after all the publicity surrounding the White House affair was "challenging," especially since MS can lead to sadness and depression.

Salahi said she and her husband raced out before dinner -- pumpkin pie, lentil soup and shrimp -- because she had "maxed out" physically and felt as if she were relapsing. In the excitement of the day, she hadn't eaten.

"It felt heavy to walk and I thought I could make it through, but I had already been there three hours," she said. "There wasn't anything on the menu I wanted to eat.

"I am not perfect and I have some crosses to carry and bear," said Salahi. "Ever since the White House, my life has been misrepresented or misinformed and they are still digging."

"During [filming with] Bravo I was the happiest and healthiest," she said. "I was doing something for myself as a woman and not just living my husband's life of polo and wining."

Dimond's book reveals more than just the media spin of the night that a security lapse allowed the Salahis to attend that state dinner. And she said her research showed the couple did have an invitation.

"They had an invitation," said Dimond. "I read all the e-mails, the phone records and translated them with lawyers and other people. They have fancy invitations for officials with creamy white tissue paper and then there is the off-the-record list, empty spots.

"His polo team was playing in India and the Indian prime minister was there," she said. "They were 100 percent welcome."

The affair prompted security changes at the White House, the resignation of social secretary Desiree Rogers and a criminal investigation.

That looks small, said Salahi, compared to her battle with MS, but she said she wants others to know she is a fighter.

"I have great hope in my lifetime see a cure for this," she said.

"My advice to others is have faith in whatever you believe in and have someone you love," she said. "I have the strongest mother and a partner who understands and helps me. It's mind of matter. When I couldn't get out of bed, my mind is what helped me and nutrition. It can be a debilitating disease, but I have MS -- it doesn't have me. It's not going to win."

ABC News Live

ABC News Live

24/7 coverage of breaking news and live events