Strategies for Managing Progressive Multiple Sclerosis During COVID-19 - Episode 3
Richard describes the journey of his diagnosis with multiple sclerosis.
June Halper, MSN, MSCN: Richard, when were you diagnosed? How long have you had MS [multiple sclerosis]?
Richard: I was originally diagnosed with relapsing-remitting MS about 12 years ago. A year later at another neurology center, I was diagnosed with neuromyelitis optica [NMO].
June Halper, MSN, MSCN: Really? That’s interesting.
Richard: My wife and I—especially my wife—said, “Let’s get a second opinion on that.” We ended up at the Mayo Clinic for 2 weeks in Rochester, Minnesota. I met with a neurologist there, Dr Claudia Lucchinetti, who said, “No, you don’t have neuromyelitis optica.”
June Halper, MSN, MSCN: She’s quite the big researcher in that area.
Richard: She developed the testing for NMO, so we thought we were going to the expert for NMO.
June Halper, MSN, MSCN: The aquaporin-4.
Richard: After 2 weeks of testing, she said, “You don’t have NMO. You have primary progressive multiple sclerosis.” That sent me on a journey. I saw Dr Patricia Coyle in Long Island, New York. She agreed that the diagnosis was primary progressive MS and then suggested that I see 1 or 2 other doctors. One of them was Dr Mary Ann Picone, whom I’ve been with ever since and I’m never leaving.
June Halper, MSN, MSCN: I’m glad. Dr Coyle was actually on our first episode of this series. She’s wonderful.
Richard: She’s another brilliant woman. Just amazing.
June Halper, MSN, MSCN: The symptoms you had were mainly related to your walking, right?
Richard: About 20 years ago, I had a bout of iritis. The ophthalmologists never went further than that. About 13 years ago, when I was walking, I noticed I’d started walking sideways a little instead of straight. Then when I was cutting the lawn, I noticed my legs were getting tired, and I would sit down. I thought, “This doesn’t make any sense.” I went to my primary care physician, who did a quick neuro test and said, “You need to see a neurologist.” It started with iritis, then that went away and it’s been walking. The issues are mainly walking.
June Halper, MSN, MSCN: That’s interesting. When I worked with Dr Picone we had a patient who had iritis. There’s not a lot in the literature, but it turned out she did. I’m sure you’ve been through a very interesting journey, but it seems that you’ve gone to some very important and very knowledgeable specialists, including Dr Picone. When we started in MS—we both started working together in the early 1990s—we really didn’t have anything. Then along came the interferons and Copaxone. Today we are blessed with about 20 medications with a whole bunch of other drugs in the pipeline.
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Transcript Edited for Clarity