Neurologists at Mayo Clinic help many people with the rare condition stiff person syndrome, also called SPS, and related conditions. SPS causes severe muscle stiffness in the back, legs and sometimes other parts of the body. In some people, only one part of the body is affected. Others also may have painful muscle spasms and unexplained falls. The condition mostly affects women, usually starting in their 40s or 50s, but it can affect people of any age and sex. It rarely affects children.
SPS is an autoimmune disease. Autoimmune diseases occur when the immune system makes antibodies that mistakenly attack the body's own healthy tissues. With SPS, the immune system attacks the nervous system. Most people with SPS have high levels of antibodies against the glutamic acid decarboxylase, also called GAD65. GAD65 helps control muscle movement. Other antibodies found in the blood or spinal fluid of people with SPS are specific to glycine receptors and amphiphysin. Glycine receptors help control muscle movement and how the body feels pain. Amphiphysin helps brain cells talk to each other.
People with SPS often have other autoimmune diseases. Examples include type 1 diabetes, pernicious anemia and thyroid disease. They may have epilepsy, which can cause hard-to-control seizures. They also may have cerebellar ataxia, which can lead to balance and speech difficulties, double vision and other problems.
Rarely, people with SPS develop stiffness and spasms along with altered consciousness, memory difficulties and irregular movements. This severe condition is called progressive encephalopathy with rigidity and myoclonus, also known as PERM. It is considered a part of the stiff person syndrome spectrum. Rarely, stiff person syndrome can be a sign of paraneoplastic syndrome, which may occur in people with cancer. Paraneoplastic syndrome is more common in people who have amphiphysin antibodies in their blood or spinal fluid.
SPS can get worse over time. Sometimes it can be confused with other diseases. So it is important to get an accurate and expert diagnosis early in the disease process. An accurate diagnosis is key to getting the right treatment.
Treatment of SPS includes:
- Medicines that target the immune system. Examples are intravenous immunoglobulin, also called IVIg, corticosteroids, plasma exchange and rituximab.
- Medicines to ease symptoms. These include muscle relaxants.
- Other approaches to ease symptoms. Examples are physical therapy and integrative medicine.
The Stiff Person Syndrome Clinic is located at Mayo Clinic in Rochester, Minnesota. Mayo Clinic also has experts who treat this syndrome and related conditions at our locations in Jacksonville, Florida, and Phoenix/Scottsdale, Arizona.
Expert diagnosis
People with stiff person syndrome often have a delayed diagnosis because symptoms can look like those of other diseases. Examples include multiple sclerosis and joint or back disease. Also, some people originally diagnosed with SPS do not have the condition but have other diseases that need different treatments.
At Mayo Clinic, experts in stiff person syndrome and related conditions aim to provide a quick and accurate diagnosis so that you get a plan of care that meets your needs. Teams of experts pinpoint specific types of stiff person syndrome, which helps guide treatment.
The Neuroimmunology Laboratory at Mayo Clinic in Rochester, Minnesota, offers the only commercially available test designed to evaluate all key antibodies for stiff person spectrum disorders. In addition, Mayo Clinic experts in the Movement Disorders Laboratory offer electrophysiological testing to diagnose people with SPS.
The Stiff Person Syndrome Clinic brings together medical experts in neurological conditions and advanced diagnostic testing to arrive at the right diagnosis and a course of action. Timely diagnosis and expert care can make all the difference to people with this complex condition.
When you arrive at Mayo Clinic with suspected stiff person syndrome, you may undergo one or more tests. These may include:
A team of healthcare professionals reviews the results. They discuss options for managing your symptoms and tailor a plan to your needs.
A team-based approach
If you come to Mayo Clinic for help with a condition of the nervous system, your first visit may be with a specialist in the Department of Neurology. If you receive a diagnosis of stiff person syndrome or your doctor thinks you may have it, you may be referred to the Stiff Person Syndrome Clinic at Mayo's campus in Rochester, Minnesota. At Mayo's campuses in Jacksonville, Florida, and Phoenix/Scottsdale, Arizona, you may be referred to an autoimmune neurologist with expertise in diagnosing and treating this condition. You also can self-refer to the Neurology Department at any campus if you think you may have this condition or if you want a second opinion about a diagnosis you received elsewhere.
Neurologists with training in autoimmune neurology may examine you, order tests and prepare a personalized plan of care in a timely way. If you wish, the clinic may send a full report to your primary care professional or other referring healthcare professionals.
Your healthcare team at the Stiff Person Syndrome Clinic also may include specialists in physical medicine and rehabilitation, pain medicine, psychology or other specialties, based on your needs. This caring team can help you with all your health concerns.
Expertise and rankings
Mayo Clinic's Department of Neurology is a leader in helping people with rare autoimmune diseases that affect the nervous system. Mayo Clinic in Rochester, Minnesota, was the first to offer a fellowship in autoimmune disorders of the nervous system other than multiple sclerosis. Fellowships are educational opportunities for advanced training in a medical specialty.
Stiff person syndrome is a rare diagnosis, but doctors at Mayo Clinic see hundreds of people with this condition. Every year Mayo Clinic specialists care for more than 3,800 people with paraneoplastic syndromes of the nervous system, including stiff person syndrome.
Mayo Clinic is a major referral center for stiff person syndrome. The Stiff Person Syndrome Research Foundation lists several Mayo Clinic doctors among its fewer than 20 recognized experts nationwide.
Top ranked
Mayo Clinic in Rochester, Minnesota, Mayo Clinic in Phoenix/Scottsdale, Arizona, and Mayo Clinic in Jacksonville, Florida, rank among the Best Hospitals for neurology and neurosurgery in the U.S. News & World Report Best Hospitals rankings. Mayo Clinic Children's Center in Rochester is ranked the No. 1 hospital in Minnesota, and the five-state region of Iowa, Minnesota, North Dakota, South Dakota and Wisconsin, according to U.S. News & World Report's 2024-2025 "Best Children's Hospitals" rankings.
Mayo Clinic is top-ranked in more specialties than any other hospital and has been recognized as an Honor Roll member according to the U.S. News & World Report's 2024-2025 "Best Hospitals" rankings.
Research and innovation
Mayo Clinic's physician-scientists and other researchers are leaders in advancing the understanding of stiff person syndrome and related diseases. They:
- Discovered the condition in 1956.
- Described the disease presentation and its outcomes in detail.
- Described how the antibodies related to SPS affect the body. They also discovered many of the antibodies that doctors around the world use to diagnose paraneoplastic syndromes.
- Participate in clinical trials to find new therapies and improve existing treatment options for SPS.
Our scientists are committed to researching the diagnosis and treatment of stiff person syndrome and related conditions. They're also working to improve outcomes for people living with these conditions.
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