After going to eight doctors and five hospitals, Bud was giving up hope.
After 38 years at General Motors, Bud was enjoying his retirement. He played golf at Oakland Hills Country Club and worked out three days a week. Then, in 1998, he developed numbness in his feet. He didn’t think much of it until it slowly started moving up his ankles, calves and thighs. Before he knew it, the numbness spread to his hands and started up his arms.
“I became very weak and began to lose my balance,” Bud said. “I was constantly stumbling around.” Only a few weeks before, he’d been able to walk miles on a treadmill. Now he was having a difficult time walking across the room. “It was upsetting,” he said. “It wasn’t that painful; just a severe loss of balance and constant numbness.”
His doctor diagnosed his condition as peripheral neuropathy and referred him to a neurologist at a major suburban hospital in the Detroit area. The specialist examined him, conducted a battery of tests and came back with his own diagnosis.
“He said it was diabetic neuropathy,” Bud remembers. “At the time, I questioned the diagnosis because I was not diabetic.” Bud pressed for more information but the doctor simply said that nothing could be done to help him.
As his condition deteriorated, he was fitted for leg braces and began to use a cane to assist in walking. He started traveling around the country to find a physician who could help. Again and again, he was diagnosed with generalized peripheral neuropathy. He got used to hearing the treatment options: “There’s not much we can do to help you.” One physician even told him he would be confined to a wheelchair by the end of the year.
Never ready to give up, Bud called The Neuropathy Association headquartered in New York City and spoke with the executive director. “I said, ‘Who is the best neurologist in the world for this? I’ll go anywhere.’” She sent him a stack of information about neuropathies and gave him a list of five outstanding specialists in the field.
One of them was Richard Lewis, M.D., from Harper University Hospital. However, at the time, Bud was in Florida so he went to a Florida physician on the list. As good as he was, he wasn’t able to help. “But when he finished giving me a battery of tests, he told me to go see Dr. Lewis in Detroit when I returned home,” Bud said. “That was the second time I’d heard his name.”
A few weeks later, Bud and his wife were back in Michigan and they went to a Neuropathy Association meeting at the Troy Public Library. “In Florida, the doctor said to see Dr. Lewis. The lady from The Neuropathy Association gave me Dr. Lewis’s name,” Bud said. “And then we go to this meeting and – by an act of God – who’s the speaker? Dr. Richard Lewis.”
After the meeting, Bud introduced himself to Dr. Lewis and explained his background. A week later they met in the doctor’s office and Dr. Lewis said something Bud will never forget. He said, “I don’t know what you have, but I’m going to do everything I can to help you.”
“Now this is a 180-degree turn from what everyone else had told me,” Bud remembers. “What a difference that makes. I had hope for the first time in a year and a half.”
Dr. Lewis began thumbing through the old lab reports Bud had collected and found something in a blood test from a year earlier. “He just stopped and said, ‘I think I found your problem.’”
An elevated protein level in year-old blood work led Dr. Lewis to diagnose Bud’s problem: Sensory-Motor Demyelinating IgM Kappa Monoclonal Gammopathy, a rare blood disorder.
“Now keep in mind,” Bud said, “the other doctors had access to this blood work too, but only Dr. Lewis found it.”
After numerous tests and procedures including plasma pheresis and bone marrow biopsies, Dr. Lewis consulted with colleagues at Johns Hopkins Hospital in Baltimore. “We decided to try a novel type of therapy which had been used only in a few other instances for this type of disorder,” Dr. Lewis said. “We basically used a designer drug that has been used for certain forms of lymphoma.”
Recent research suggested that it might be useful for certain neuropathies like Bud’s. “We were fortunate that he responded quite dramatically and beautifully to the drug and he has been essentially in remission for the last 2 years,” Dr. Lewis said.
After taking the medication, the numbness started leaving his arms and hands. A couple weeks after that, it retreated from his legs. Today, Bud feels great and is able to play golf three days a week.
Bud credits many prayers from family and friends and Dr. Lewis for the miraculous results. In thanks, he has invited the doctor to play golf with him at Oakland Hills Country Club, the scene of the 2004 Ryder Cup. “If I could, I’d take him golfing at Oakland Hills every week for the rest of my life in gratitude,” Bud said.