Margaret Shepard (@margieshepard) published a blog post · December 30th, 2012
Multifocal motor neuropathy
"I immediately called the doctor, fearing I had had a stroke," says Van Gorp.
A visit with her doctor ruled out a stroke. Several appointments with specialists and numerous tests followed, but didn't bring her any closer to a diagnosis.
As the weeks passed, Van Gorp's right hand would sometimes clench up, then eventually release. The muscles in her arm were beginning to atrophy, and she was losing strength in other limbs as well.
Finally, a specialist suggested that Van Gorp might have ALS, or Lou Gehrig's disease. He offered to refer her to an ALS specialist at Mayo Clinic or another medical facility. She chose Mayo.
"I had a brother-in-law who had lung cancer," she says. "He went to Mayo and they treated him so well. My sister could not say enough good things. I just felt that it was the right place to go."
Nearly a year after her initial episode, Van Gorp began three days of tests at Mayo Clinic in Rochester, Minn., with neurologist Brian A. Crum, M.D., including blood tests, an MRI, extensive EMG sessions and an overnight sleep study.
When the tests were completed, Dr. Crum told Van Gorp that she had a condition called multifocal motor neuropathy (MMN) — a treatable peripheral nerve disorder, whose symptoms mimic those of ALS.
Van Gorp has this advice for those who are concerned they may have MMN or ALS:
"I would strongly suggest they ask for a referral to Mayo," says Van Gorp. "I have been to other medical centers for other types of treatments and I received good care, but I never felt that they were as thorough. Mayo is a wonderful place to get your questions answered."