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Stiff Person Syndrome

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Most people get muscle cramps and stiffness every now and then. But picture having them all the time — at a pain level of 10.

When you have stiff person syndrome (SPS), these symptoms can control your life. The stiffness and spasms from this rare neuromuscular and autoimmune condition can affect how you move. Stiff person syndrome can also mess with your balance and coordination, making it easier for you to fall and get hurt.

You probably never expected to get this diagnosis. And now, you may wonder what’s next. It’s only natural to have worries and questions. Our expert neurology providers have answers and the personalized support you need as you start your treatment journey.

Why Choose Cleveland Clinic for Stiff Person Syndrome Care?

Patient-centered care:

When you’re diagnosed with a neurological condition like stiff person syndrome, you may find yourself in unfamiliar territory. And that can be stressful. That’s why we’re here with personalized treatment, caring support and resources to keep you informed and at the center of all we do. Meet our team.

Skilled collaborative providers:

Because stiff person syndrome has neurological and autoimmune roots, we make sure you have a care team that matches your unique needs and symptoms. For the best possible treatment results, you may see experts from many different specialties, like neurology, rheumatology, physical therapy, psychology and more.

Comprehensive care:

When you come to Cleveland Clinic, we take time to find out exactly how stiff person syndrome affects you and your life. We do many tests to pinpoint symptoms and build a treatment plan based on what we learn and help you learn how to manage your condition.

Innovation and research:

Cleveland Clinic’s healthcare providers constantly research new ways to diagnose, treat and manage neurological conditions. Our team often does this through clinical trials. These let us try new drugs, tools and therapies not widely available. Ask your provider if you qualify for a study.

Virtual visits:

Short on time but need a quick touch base with your provider? No worries. Our virtual visits make things easy. You can meet with your care team online using a smartphone, computer or tablet. You’ll get the same great care and one-on-one attention as an in-person appointment.

National recognition:

Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.

Diagnosing Stiff Person Syndrome at Cleveland Clinic

Stiff person syndrome’s symptoms can resemble those of other autoimmune conditions. With any of these, your immune system thinks your healthy cells are invaders. And it starts attacking them with protective protein warriors called antibodies.

With stiff person syndrome, antibodies fight chemicals that help your muscles move (neurotransmitters). This causes painful spasms and stiffness in your abdomen (belly), chest and back. These symptoms can spread to your arms and legs and worsen with time. And all of this can get in the way of your life and well-being.

Types of stiff person syndrome

We link classic SPS to an antibody called glutamic acid decarboxylase (GAD). It’s the most common type. There are also other types of SPS involving only specific parts of your body. These types can also cause more noticeable coordination problems (ataxia).

What to expect during your evaluation

Your story is an important part of getting a correct diagnosis. So, when you come to your first appointment, don’t be surprised if your provider asks questions like:

What kind of symptoms are you having?
How long have you had these symptoms?
What kind of pain are you having?
How bad is your pain?
How is this condition affecting your life?

You’ll also have a physical exam and a neurological one. And you may get orders for some tests.

Testing for stiff person syndrome

Your provider may set up an antibody blood test to look for GAD antibodies or things that can rule out another condition. You may also have an electromyogram (EMG) to measure electrical activity in your muscles. And a spinal tap (lumbar puncture) lets our team check your spinal fluid for GAD antibodies or signs of the disorder.

Meet Our Stiff Person Syndrome Team

Because SPS is rare, many healthcare providers aren’t familiar with it, so it’s important to find a team that’s experienced in diagnosing and treating it — one with providers from different specialties, like:

We build your team based on your specific SPS diagnosis, symptoms and needs. These providers work together to plan your care and help you manage your condition.

Providers Who Treat Stiff Person Syndrome

Locations

Our healthcare providers see patients at convenient locations throughout Northeast Ohio and Florida.

Treating Stiff Person Syndrome at Cleveland Clinic

Our goal for SPS treatment is to manage (or even minimize) your symptoms. We also want to improve how you move and feel. How we do this depends on the kind of symptoms and SPS you have. Treatment usually includes:

Medications and therapies

Your care team may recommend taking medications like:

Your provider might also recommend therapies to help manage your symptoms, like physical therapy or hydrotherapy (water therapy). Or you may want to try complementary therapies like massage or acupuncture.

Immunotherapy

For some people with SPS, immunotherapy can help ease symptoms. One treatment uses healthy natural antibodies called immunoglobulins. Intravenous immunoglobulin (IVIg) has been shown to help people manage SPS pain and stiffness.

Living With Stiff Person Syndrome

Managing a chronic (lifelong) condition like SPS means you’ll have a lot of checkups with your care team. You’ll meet with them regularly to make sure your treatments are working and to see if your symptoms are progressing (getting worse). If we notice changes, we can find new ways to help you do daily tasks, keep your balance and stay as mobile as possible.

We also keep a close eye on your mental and emotional health. It’s common to feel anxious or depressed when you have SPS. If you’re having these symptoms, we can help you find the best mental health provider for your needs. Our team can also connect you and your family with support groups.

Taking the Next Step

When you get a diagnosis like stiff person syndrome, you might not know what to do or who to turn to next. That’s why we’re here. Our team will walk you through what it takes to confirm your diagnosis and manage this condition. We understand it can be overwhelming to adapt to a new normal. We’re here to support you and your family every step of the way.