Many people with FSHD do not see a neuromuscular doctor regularly. Told that there is no treatment, they wonder, “What’s the point?” In this video, Jeffrey Statland MD explains why a yearly visit is important.
First, the doctor can check to make sure symptoms have not gotten significantly worse since the last visit. With a slowly progressive condition like FSHD, weakness can sneak up and lead to bigger problems down the road. For example, an individual may try to adapt to increased muscle weakness in ways that can lead to muscle strain and injury, and a timely intervention with exercises or braces could help prevent that. Weakness in breathing muscles can lead to a build-up of carbon dioxide in the bloodstream and cause poor sleep and fatigue.
Second, a yearly visit to the doctor gives the individual a chance to learn about advances in research, or opportunities to volunteer for clinical studies. Or one could meet with a multidisciplinary team to get evaluated for physical therapy, orthotics, etc.
Of course the value of the yearly visit depends on being able to find a knowledgeable and sympathetic doctor. Many people feel it’s worth the time and expense to travel to a leading FSHD clinical center. Others are fortunate enough to find a suitable doctor close to home. FSHD specialists are still a rare breed, so if you find a doctor you like, please share that information with us. If you need to locate a doctor, please contact us and we’ll do our best to connect you with one.
Would love to find a good FSHD doctor in Portland, Oregon. When I’ve seen my neurologist in the past they pretty much say “yep, you got FSHD, come back if you feel worse or if you have concerns”. And when I do, they say the same thing.
We’ve asked around for recommendations of a physician in Portland but so far have come up empty. A good FSHD doctor shouldn’t simply be asking a patient to self-report if he or she is feeling worse, but should carry out a strength and functional assessment to see if there has been any objective change since the previous year. If your doctor won’t do that, it may be time to find another.
I’m in Portland looking for one too! Have tried two at ohsu and they treated me the same way.
i fell in april 2017. Was diagnoised with Rhabdo. My legs have gotten weaker and weaker, No one has realy addresses the problem and dont seem to care so I plan toas My Dr to so some test for muscular dystrophy. Thanks for listening!!!!!!!!!!!!!
Shirley Mullins
sbmullins37@consolidated.net
Dr. Blume in Peoria Illinois has a wonderful program for his FSH patients. You will be introduced to a dietician, nurse, social worker,PT therapist, OT therapist,speech pathologist, orthotist, durable medical equipment provider, and a respiratory therapist.
I now have met them all and have there phone numbers and Email addresses. It gives me a feeling that I am no longer on my own but have a network of people to help.
The phone # is (309)624-8500.
Hope this info will be of value to someone.
Any Canadians wanting information about Neurologists with FSHD experience are welcome to email or call me [Anne Harland]. I run a National FSH Network. There are fewer doctors with this expertise in Canada as compared to the US however there are some in the larger urban centers. harland.milne@sympatico.ca 905 843-1403