You’ve just learned your weak muscles and trouble walking could be muscular dystrophy. Wait — Isn’t that something kids get?
Yes. But so can adults. More than 30 genetic (inherited) conditions fall under the muscular dystrophy umbrella. And they affect people of all ages. These conditions cause problems with your muscles — and get worse over time.
Finding out you may have muscular dystrophy (MD) can be overwhelming. And leave you with a lot of questions. Our neurology team is here to help you make sense of what’s happening and provide the care you need. We guide you through diagnosis, treatment and beyond. We blend experience with compassion to help you manage your condition and support you at every turn.
You’ll have a personalized team of healthcare providers working together and sharing their expertise. This lets us offer the highest quality treatment and keeps you at the center of all we do. You may see providers from neurology, cardiology, pulmonology, orthopaedics, genetics, physical therapy and more.
Your emotional well-being is an important part of your care plan. Our compassionate providers make sure you know what to expect throughout diagnosis and treatment. And they’ll give you the support you need along the way. We want you to feel comfortable and confident about your care plan.
Our team uses the latest testing and treatments to pinpoint a correct diagnosis. This lets us tailor treatment to your specific needs. We make sure you have the best providers and therapies at every stage. Meet our team.
Quick check-ins and follow-ups don’t always need to be in person. When you schedule a virtual visit, you can meet with your providers one-on-one from just about anywhere. And you’ll get the same great care as an office visit.
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Muscular dystrophy is a relatively rare, inherited neuromuscular condition. Changes (mutations) in the genes responsible for how your muscles develop and work trigger it. It’s a form of myopathy — a condition that affects the muscles connected to your bones. These skeletal muscles help you walk, climb, lift and stretch. Different gene mutations cause different types of MD in adults and different symptoms:
When you have MD, it gets harder to do everyday things. Your specific symptoms depend on the kind of muscular dystrophy you have.
You might start feeling weak. Climbing stairs, walking or running might not be as easy. The way you walk (gait) might change. You may develop difficulty swallowing or breathing. And eventually, your muscles might get tighter (contractures), shrink (atrophy) or hurt.
You’ll want to be prepared to talk about how you’ve been feeling when you come to your first appointment. Hearing you share your story is an important part of how our team confirms a diagnosis — and makes sure you get the most personalized treatment.
Your provider will want to know:
During your visit, your provider will do physical and neurological exams. They’ll also check how your muscles move. And they may order a few tests, like:
Cleveland Clinic’s team-based care gives you the combined experience of healthcare providers working together to plan your treatment. Depending on your particular diagnosis, your muscular dystrophy team may have providers like:
Our healthcare providers see patients at convenient locations throughout Northeast Ohio and Florida.
Once we learn what kind of muscular dystrophy you have, we can work with you to find the best ways to manage its symptoms. You may have:
Movement is important. And with MD, things like walking or combing your hair can be hard. That’s why you’ll do physical and occupational therapy (PT and OT). Our skilled therapists will help you stretch and strengthen your muscles. And they’ll show you easier ways to do everyday tasks. This may include using mobility aids — like canes, walkers or wheelchairs — to help you move better and prevent falls.
If MD causes swallowing problems, you may also have speech therapy. It’s more than just speech classes. Our therapists teach you how to use your tongue and throat muscles to swallow safely. If you have surgery on your throat to help you breathe, you may also need speech therapy.
If you have heart rhythm problems or heart failure, a pacemaker may help. If muscular dystrophy affects your lungs, cough-assistance devices and respirators can improve breathing.
Sometimes, you may need surgery if you have MD. We may need to loosen tension on tight (contracted) muscles or to straighten your spine if it starts curving (scoliosis). In rare and advanced cases, we may recommend a tracheostomy (hole in your windpipe to help you breathe) to allow assisted ventilation if you can’t breathe correctly, and if this is something you desire.
While there aren’t yet medications available for the muscle-specific symptoms that come with MD, we may give you different medications for weakness in cardiac muscles and possible heart failure.
There are some things you can do at home to help manage your muscular dystrophy and reduce the risk of complications. Drinking plenty of water and eating healthy foods can help. So can exercise, based on your care team’s guidance.
Keeping up with your follow-up care is also important. This is how we keep an eye on your health, catch any changes and adjust your care when necessary. And if you ever feel stressed or depressed, we can connect you (and your loved ones) with our counseling team and support groups that understand what you’re going through.
Getting a diagnosis like muscular dystrophy isn’t easy — and it’s OK to have questions about what comes next. But you don’t have to face it alone. We’ll be by your side from the moment you make your first appointment. We’ll take the time to listen, answer your questions and help you find a treatment plan that fits your life.
Getting an appointment with Cleveland Clinic’s muscular dystrophy experts is easy. We’ll help you get the care you need.
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