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Doctors couldn’t diagnose him, then they found he has this rare disease

GBS is a rare disorder in which the body’s immune system attacks the peripheral nerves, causing muscle weakness and sometimes paralysis.

When someone suddenly can’t walk, a stroke or head injury is the most obvious cause. But for 41-year-old Jerusalemite Nir Levy, who lost sensation in his legs and stopped walking after suffering an upset stomach last year, it was something entirely different.

“A decrease in motor function in a short period of time should turn on a red light in everyone,” the Hadassah University Medical Center physician who identified the condition, Prof. Mark Gutkin, said.

“A decrease in motor function in a short period of time should turn on a red light in everyone.”

Prof. Mark Gutkin

Gutkin, a senior neurologist who heads the amyotrophic lateral sclerosis clinic at Hadassah, and his colleagues produced a speedy diagnosis of a rare autoimmune disease and provided him with a tailored treatment that saved Levy from being in a wheelchair for the rest of his life.

“It all started over eight months ago when I had an upset stomach,” Levy recalled. “I didn’t give it much importance, as everyone goes through such an event during their lifetime.”

“But after a few days, I began to feel that the muscles in my legs and hands were less functional. I thought I had pulled some muscles. I walked more slowly. Basic actions such as opening a drawer, brushing my teeth and eating, suddenly became more challenging,” Levy said.

His condition deteriorated but doctors still couldn’t find the cause. “Several times, I went to my health maintenance organization clinic for a check-up, but each time, there was no diagnosis of anything that required immediate treatment,” he said.

“The simplest actions became more complex, until the day I collapsed. I collapsed like a tower of cards and couldn’t get up,” he added.

“I was taken by ambulance to Hadassah in Ein Kerem, where my life changed radically. Suddenly, in the middle of my life, at the peak of my career, I became a patient who needed nursing care. I lay in bed unable to walk and get up, literally paralyzed. I was connected to a monitor and fluids,” Levy said

In the emergency room, he first heard that the doctors suspected he had an autoimmune disease and underwent numerous tests.

He was then officially diagnosed with Guillain-Barre syndrome (GBS), a severe multi-nerve infection. “It’s impossible to explain how traumatic this diagnosis is and puts everyone in shock,” Levy recalled. “We were stunned, and I was very scared that I would never in my life walk again on my feet.”

Guillain-Barre syndrome
GBS is a rare disorder in which the body’s immune system attacks the peripheral nerves, causing muscle weakness and sometimes paralysis. Weakness and tingling in your hands and feet are usually the first symptoms. These sensations can quickly spread, eventually paralyzing the whole body in severe cases.

Symptoms can progress within hours, days or weeks, but most people start to recover two to three weeks after symptoms first start.

Recovery may take as little as a few weeks or as long as a few years. Most people recover fully, but some have permanent nerve damage and in some it is fatal.

Among the conditions that trigger it are diarrhea and respiratory illness. About two out of every three GBS patients had diarrhea or a respiratory illness several weeks or months before developing GBS symptoms. Other GBS patients have the flu or infections with cytomegalovirus, Epstein- Barr virus, Zika virus or other viruses.

GBS is rare; the US Centers for Disease Control and Prevention estimates that only about 3,000 to 6,000 Americans develop GBS in a single year.

“Nir came to us with clear symptoms of GBS,” said Gutkin. “In many cases, the disease appears after an infectious disease such as a routine throat infection or even – as in Nir’s case – indigestion.” “There are cases in which we see within a few days a significant worsening that causes very significant limb paralysis, but the greatest danger is in paralysis of the respiratory muscles.”

“The most important thing is to recognize the disease. If there is a suspicion of the possibility of the disease, a neurological clinical diagnosis should be made quickly. For us, a neurological examination is one of the most important tools for diagnosing it,” Gutkin explained.

There are quite a few cases in which, unfortunately, the disease progresses quickly, and people arrive for treatment a little too late.

“The disease can become complicated, damage the respiratory tract or even the functioning of the heart and put the patient in a life-threatening situation. “Rapid identification of the disease and proper treatment prevents the deterioration of the disease, and most patients return to normal functioning after rehabilitation,” the neurologist added.

Levy was treated at Hadassah in a procedure known as plasmapheresis, connected to a machine through which his blood was removed, separated from the light-yellow plasma fluid that composes it and returned to the body without the defective plasma.

The blood cells that were returned to the body naturally produce new, healthy plasma, instead of the plasma that was removed. After the treatment, he has a long and arduous way to go in restoring the abilities he lost through intensive treatment at Hadassah’s rehabilitation department on Mount Scopus.

“From the bottom of my heart, I would like to thank the staff who treated me and brought me back to the person I was before the upheaval I went through,” Levy said, “and to the staff at the Hadassah Ein Kerem emergency room and the doctors who were called in and made the diagnosis of the disease with very impressive professionalism.”

“I have no doubt that the prompt and rapid treatment halted the disease and brought about ongoing improvement every day. The rehabilitation I am undergoing at Hadassah on Mount Scopus is amazing, and I am on the way to a full recovery. I’m already walking on my own,” Levy concluded.

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