The Johns Hopkins Stiff Person Syndrome (SPS) Center, led by Dr. Scott Newsome, offers patient education, symptom management and hope for the future for people with this rare disorder. Our multi-specialty team includes experts in neurology, immunology, ophthalmology, neuromuscular disease and related fields. With access to one of the largest databases of SPS biomarkers, our team works to advance our understanding of this disease and leads the way toward more effective treatments.
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About Stiff Person Syndrome
Stiff person syndrome is a rare disease affecting only one or two people per million. It commonly causes muscle stiffness and painful spasms that worsen over time. They can be triggered by a variety of things including sudden movement, cold temperature or unexpected loud noises.Learn more about stiff person syndrome
Why Choose Johns Hopkins SPS Center
Our center sees more people with SPS than other centers around the world. We maintain a huge database of clinical findings and outcomes that offer valuable insights we apply to patient care.
SPS can cause a range of symptoms that vary from person to person. Our team assesses every aspect of life and well-being affected by this condition and develops a treatment plan tailored to you.
Experts in autoimmune neurological disorders, neuro-ophthalmology, movement disorders and neuropsychology work together to offer you the best care.
Gay was experiencing debilitating stiffness and spasms in her legs. Trying to solve the mystery of her symptoms, she learned about stiff person syndrome, a very rare disease with symptoms that matched hers.
After unexplained muscle spasms and stiffness knocked her down for two years, Ruth found the care and treatment she needed at Johns Hopkins.
- We will start with a comprehensive assessment that may include a series of tests and evaluations over several days (if needed) to get insight into your symptoms and quality of life and to confirm the diagnosis.
- The assessment helps inform a treatment plan, which may include:
- Medications to help with symptoms (such as painful spasms or stiffness)
- Medications targeting the immune system, such as immunosuppressant therapies and immunomodulating therapies including plasmapheresis, intravenous immunoglobulin (IVIG), rituximab, etc.
- Non-medication treatments, such as physical therapy, behavioral therapy, yoga, acupuncture and more.
- Regular follow-ups will help your doctors support your optimal health for the long term. We will monitor your progress, connecting you with emerging treatments and new knowledge.
If infusions are part of your treatment, they are available at the Johns Hopkins Infusion Center at Green Spring Station in Lutherville.
Lisa Fox, PA-C
Sarah Snoops, R.N.
The center’s repository of SPS biomarkers and other patient data is among the world’s largest, providing rare insight into mechanisms of disease, criteria for accurate diagnosis and promising therapies. Through long-term tracking of people with SPS, our team is gaining a better understanding of how SPS impacts people, and how to treat each person with the best possible outcomes in mind.
Some of our main research goals include:
- Defining the full clinical spectrum of SPS (helps promote awareness)
- Identifying biomarkers of disease burden and pathogenesis (potential cause of SPS and response to treatment)
- Developing/finding better ways to treat SPS.
Patients of our center can be part of this research. There is little to no time commitment outside of your regularly scheduled visits.
During your first appointment, you will meet with Dr. Newsome and his team. This visit might be long. While we strive to remain on schedule, Dr. Newsome also strives to be as thorough as possible. We are committed to training the next generation of experts in SPS, so you will likely meet our fellowship trainees as well.
If you are experiencing symptoms that could indicate SPS, our team may need to order or conduct certain tests to confirm the diagnosis. These tests may include:
- Blood work (usually done during your first visit and on many follow up visits)
- An electromyography (EMG) test to evaluate nerve and muscle function. It is often done during your first visit, even if you had it recently.
- If a lumbar puncture is recommended, it is usually done before your first visit, not on the same day.
To prepare for EMG, we ask that you stop taking all muscle spasm/relaxer medications for at least 24 hours before the test. Common examples of these medications include baclofen, clonazepam, diazepam, alprazolam, lorazepam, and tizanadine. You may feel poorly the day of your EMG, but you can take your medication(s) right after you finish the EMG study.
Make sure that your rheumatology, neurology and other doctors you saw for SPS symptoms send all relevant clinical notes to our access services team. These notes may include:
- Blood test results including anti-GAD (glutamic acid decarboxylase) 65 antibody level, amphiphysin antibody, and/or anti-glycine receptor antibody; as well as, several other serum autoantibodies, hemoglobin A1c and vitamin levels.
- Lumbar puncture results, specifically the anti-GAD65 antibody result (if previously done).
- Imaging studies: MRI of the brain and spine, body CT scan, body PET scan, and mammogram/other breast imaging. Please send discs for uploading second opinions or upload the studies remotely through the AMBRA portal.
- Neurophysiological study (EMG) reports and whether paraspinal muscle EMG was performed.
If you would like us to share the notes from your first appointment with your other healthcare providers, please have their contact information available, including fax numbers.
This depends on your needs. It might be recommended for you to be seen more often early in your treatment to help create an effective treatment plan. In-person visits can be lengthy, but you get a thorough assessment of your symptoms and a comprehensive strategy to address them.
Most of the care you will receive, including treatment and workup, is in an outpatient setting. Patients are rarely admitted to the hospital from our center.
Most often, we see and treat our patients with SPS for a lifetime. Most treatments take time to become effective and may require adjustments.
Repeat bloodwork is an important way to monitor for the development of any other conditions that may be associated with SPS.
If you had electromyography (EMG) done outside of Johns Hopkins, we will often ask you to repeat it at Johns Hopkins because the experts here know what to look for in SPS patients.
- Chronic or long-term conditions such as SPS can heavily impact quality of life and emotional wellbeing. It is important to treat this part of your condition. Talk to your doctor about medications, counseling and other treatment options.
- Anxiety is also a part of SPS. Treating anxiety/depression and reducing stress have helped our patients. Talk to your doctor about managing anxiety. Medications and other treatments might be needed.
- Exercising and staying active is important.
The Social Security Administration has included SPS in their Compassionate Allowances Initiative. This initiative helps patients with certain medical conditions that cause severe disability process disability claims quickly.
- What Is Stiff Person Syndrome? | The News York Times
- Fact check: Experts say there's no link between COVID-19 vaccine and stiff person syndrome | USA Today
- No data linking COVID-19 vaccine to stiff person syndrome | AP News
- Blood Treatment Safe, Promising for Stiff-Person Syndrome | Medscape
- Celine Dion has stiff-person syndrome, here's what that means | CTV News
- Expert explains Celine Dion's stiff-person syndrome diagnosis | NewsNation Prime
- Celine Dion diagnosed with stiff person syndrome | FOX News
- Celine Dion diagnosed with stiff-person syndrome: What is it? | PIX 11
- Celine Dion’s Stiff-Person Syndrome Is ‘a Really Difficult and Disabling Disease,’ Expert Says | Rolling Stone
- What is stiff person syndrome? Diagnosis, symptoms and treatment | CNN Health