Mystery Diagnosis: Prominent Buffalo Lawyer thankful to be alive after fighting rare disorder

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BUFFALO, N.Y. (WIVB) — A little more than eight months ago, a well-known Buffalo-based, civil rights attorney was fighting for his life. His family thought he was having a stroke, but all those tests came back negative.

But as luck would have it he, and his doctors, were in the right place at the right time.

Steve Cohen says he’s lucky to be alive. This rare disorder is hard to diagnose. Now, Buffalo hospitals are becoming a hub for this type of research so they can better learn how to treat it.

Cohen said, “I had lost the ability to speak, the ability to move my limbs. I  was still breathing on my own, but that was going to go fast.”

Cohen is well known for fighting for those who don’t have a voice. For the first time, he was fighting for his own life.

It was an average Saturday morning when Cohen first noticed something was wrong. He was heading into the office to prep a case. He said, “When I said goodbye to my wife, she said, ‘What did you say?’ We noticed for the very first time, she noticed there was a slur in my speech. She said, ‘Get in the car, we’re going to the hospital.’ She insisted, and it’s a good thing she did.”

When the doctors at Buffalo General Medical Center saw him, the team immediately put stroke protocol into effect.  But all of those tests came back negative.

One of his doctors is Dr. Nicholas Silvestri, MD, Assistant Professor of Clinical Neurology with the University at Buffalo Jacobs School of Medicine.

He said, “In Mr. Cohen’s case, yeah it is a good thing he came in when he did. We caught him before he developed real, big time respiratory difficulty, and we were able to treat him.”

It turns out, Cohen had a rare disorder called Miller-Fisher, a type of Guillain-Barré syndrome. It’s often brought on by a minor infection, but then cells start to attack the body.

Dr. Silvestri said, “These antibodies, for whatever reason, look at nerves. Specifically, they look at the insulation around the nerve. For whatever reason, they attack the cell as well. So the bodies own immune system is attacking it. It can affect people of any age, of any gender, of any race, of any medical background. It can happen to anyone.”

And its rare; only one in 100,000 are diagnosed.

But even so, Dr. Silvestri said, “We typically see on average one, maybe two cases of Guillain-Barré syndrome at Buffalo General Medical Center every month.”

For Cohen, he was completely paralyzed for six days. He couldn’t move, speak or swallow.

Cohen said, “It was hard for me. It was the fear that my wife and kids had. They didn’t know what was going on with me and they didn’t know if I was going to be getting better.”

People came to pray for him.

“Every denomination, all races, creeds, genders, people would come in and pray with me,” Cohen said, noting he never forgot about his clients.

He said, “I asked God, just give me back speech. That’s all I need, power of speech. Even if I can’t use my arms or my legs, I think I’ll be able to still represent my clients.”

Now Dr. Sylvestri is part of a multi-center international study about Guillain-Barré syndrome. Over 1,000 patients, including Cohen, and several others from the Buffalo area, will take part in helping doctors better understand this disease.

Cohen said, “Maybe this can be understood by emergency room physicians everywhere, so they can recognize it more quickly.”

News 4 asked Cohen if he felt lucky. He said, “The word luck doesn’t begin to explain how I feel. I am blessed beyond belief.”

For more information on the clinical trial study that Dr. Silvestri is working on, you can visit this website for further details.

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