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Cecilia Van Gorp woke one morning to find that she had lost movement in her right hand.
“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.”
Daughter possibly diagnosed with mmn.
Have you found any treatments that worked?
I was diagnosed with MMF several years ago. I was on IvIg for several months, but didn’t see any response, so I stopped taking the drug due to the extreme expense. Most of my tricep has atrophied, along with other muscles in my hand and arm.
i have been diagnosed with the same disease…I am currently at the Lou Gehrig center @ Cleveland Clinic Ohio…The head of the ALS center is one of my doctors……like you my hand and now arm are atrophing and they say I will be a quadraplegic in less than 8 years….are you being given any treatments or hope….I am releived I don’t haveALS…but feel so helpless as I deteriorate..It took me 18 months to get a sketchy diagnosis….are you taking any drugs that help your condition….I am 65years young and just starting my retirement…thank you for sharing
I have been diagnosed with MMN. Would you mind sharing Mayos treatment protocal ?
Hello and thanks for your question. This webpage on our website may be helpful to you regarding MMN: http://mayoresearch.mayo.edu/mayo/research/neurology/peripheral-nerve.cfm
I. Have multifocal motor neuropaty it is affecting my. Legs and back
My husband started experiencing symptoms in late 2011. We waited until August of 2012 to see a doctor due to insurance. He was quickly diagnosed with MMN. Went to Mayo for a second opinion and we were both very disappointed with the personnel there; abrupt, rather rude and rushed. He is currently receiving IVIG, and has been since August of last year. He has many side effects with this treatment, so we are now trying to get approved for the SCIG protocal. If you would like referral to a wonderful doctor in the Phoenix area, chat and feel like you’re speaking with someone that understands, let me know!
Hi Jeanett, We are sorry to hear about your experience, please feel free to contact our Office Of Patient Affairs at 507-284-4988 to discuss further.
I have MMN and treated with IVIG every 3 weeks. My primary physician is at Rochester MN Mayo Clinic. I spent the winter in AZ and would like to know more about your neurologist in AZ.
Syl, his name is Dr David Saperstein. He’s on Camelback and 40th Street. He is wonderful to work with, but you’ve got to make an appt far in advance for initial consult
Dr. Saperstein is one of the top MMN specialists in the country. I fly to Phoenix twice a year for checkups with him.
Hi all,
Does MMN effect speech. my brother in all was told he had ALS last Nov 2012. He is still the same symptoms today, he is working every day and getting on with life. He gets down at times thinking about his future. he was told he had the bulpar type. do you think he maybe diagnosed or a miracle, or a very slow type?
.
I meant “mis diagnoised”
Bernie, Thanks for the question. We’ll forward it for a possible response.
Bernie,
Dr. Crum says MMN generally does not affect speech. Bulbar ALS starts in speech and swallowing and can progress in different rates. I hope that helps a little.