Getting Disability for Stiff Person Syndrome (SPS)

Stiff person syndrome (SPS) is a debilitating neurological disorder that causes intermittent muscle stiffness in the limbs (arms and legs) and torso. The disorder affects both men and women but is twice as prevalent among women.

While there's no cure for SPS, its symptoms can often be moderated with a combination of medications—especially early on. But SPS is a progressive disorder with symptoms that can become severe enough to prevent you from working and, thus, qualify you for disability benefits.

Symptoms and Treatment for Stiff Person Syndrome

Stiff person syndrome is a rare, neurological condition with symptoms that include:

• painful muscle spasms that can last for hours
• muscle stiffness that begins in your torso and progresses to your arms and legs
• hunched posture
• difficulty walking
• falls caused by strong muscle spasms, and
• injuries and fractures due to falls.

Those with SPS also tend to have an increased sensitivity to sounds, touch, and stress—all of which can trigger muscle spasms. Many people with SPS become homebound because everyday sounds, such as car horns and loud voices, can trigger muscle spasms that place them in danger of injury.

How Do You Get SPS?

Doctors aren't sure what causes SPS, but it's believed to result from an autoimmune reaction affecting your brain and spinal cord. SPS shares many of the symptoms of other disorders, and thus, it's often misdiagnosed as another condition, such as:

• Parkinson's disease
• multiple sclerosis (MS)
• fibromyalgia
• psychosomatic illnesses like somatoform disorder
• anxiety, or
• phobia.

Prescription muscle relaxers and medications that target muscle spasms can reduce some SPS symptoms. Intravenous immunoglobulin (IVIg) has also been used successfully to reduce symptoms like muscle stiffness and sensitivity to noise, light, and stress and to improve balance and gait in those with SPS.

Is Stiff Person Syndrome a Disability?

The Social Security Administration (SSA) considers stiff person syndrome a disabling condition when it starts to cause severe physical problems. But Social Security doesn't pay SSDI (Social Security disability insurance) or Supplemental Security Income (SSI) disability benefits based on a diagnosis of SPS alone.

You can qualify for benefits if your symptoms are severe enough to meet the requirements of a disability listing in Social Security's blue book. Social Security assesses stiff person syndrome using its impairment listing 11.17, for neurodegenerative disorders of the central nervous system (more on this below).

Expedited Processing for Stiff Person Syndrome

Because of the serious nature of some conditions, Social Security has established a list of illnesses that are eligible for immediate approval of benefits. These are called Compassionate Allowances, and SPS is one of the conditions eligible for a compassionate allowance.

SPS has alternate names under the SSA's compassionate allowances list (CAL), all of which are eligible for immediate benefits:

• stiff man syndrome (SMS)
• stiffperson's syndrome
• Moersch-Woltman syndrome
• stiff baby syndrome
• focal stiff person syndrome
• stiff limb syndrome
• jerking stiff person syndrome, and
• progressive encephalomyelitis with rigidity and myoclonus (PERM).

Social Security will treat your application as a compassionate allowance if you have documentation of a stiff person syndrome diagnosis and you meet the requirements of listing 11.17.

Meeting the Listing for Neurodegenerative Disorders of the Central Nervous System

Social Security will automatically approve your disability claim for stiff person syndrome if you meet the requirements of listing 11.17 (neurodegenerative disorders of the central nervous system). To meet this listing, one of the following must be true:

• You have so much difficulty moving two of your extremities (arms or legs) that you're extremely limited in your ability to:
  • stand up from a seated position
  • balance while standing or walking, or
  • use your upper extremities (arms, hands, or fingers).

Or

• You're slightly less limited physically, but you also have a significant amount of mental difficulty with:
  • memory
  • focus
  • social interactions, or
  • taking care of your basic needs.

What Medical Evidence Do I Need to Get Disability?

When you apply for disability due to your SPS, you must supply Social Security with the following medical evidence:

• complete medical records from physicians who treat you for your SPS
• medical records from any facilities where you've received treatment for your SPS
• any records that document the progression of the disorder
• copies of electromyography reports (EMG)
• anti-glutamic acid decarboxylase antibody (GAD) test results (this is the most important antibody test you need)
• antipancreatic islet cell and antiamphiphysin antibody testing results, and
• lumbar puncture results.

It's helpful to see a neurologist for your condition. If you have neurological symptoms that are getting progressively worse, you have a better chance of getting disability benefits for stiff person disease.

The more medical evidence you provide with your initial application, the faster you'll be approved for benefits.

Do I Need to File a Special Application for a Compassionate Allowance?

You don't need to file a special application if you have a condition on the compassionate allowance list (CAL). However, if you have a CAL condition, it can be helpful to advise your SSA field office in person when you first apply. Although Social Security should identify your SPS as a CAL condition, that doesn't always happen.

If you're applying for SSDI, you can apply online at the Social Security website, in person at your local SSA office, or by phone at 800-772-1213. However, if you're applying for SSI disability benefits, you can usually only start your application online. You'll most likely have to speak with a Social Security representative in person or by phone to complete the process.

If you have other medical conditions, be sure to list them on your disability application, even if alone they aren't severe enough to qualify for disability benefits. For instance, stiff person syndrome is sometimes found in people who suffer from the following disorders:

• diabetes
• breast cancer
• epilepsy
• thyroiditis, and
• pernicious anemia.

And it's not uncommon for people with SPS to also develop symptoms of depression. A combination of severe and non-severe conditions can sometimes make Social Security more likely to grant disability benefits.

How Long Will It Take Me to Get Benefits?

Claims based on non-CAL conditions can take months or even years to decide. However, if you have a CAL condition like SPS, Social Security will try to approve your claim as quickly as possible (sometimes in just weeks). But some factors can slow down the approval time, such as:

• whether Social Security has received enough medical records to support an approval
• whether Social Security decides to send you for a consultative examination (CE), and
• whether your claim is selected at random for a quality assurance review.

For more information, see our articles on the factors that can delay your disability claim and how you can speed up the Social Security claims process.

Do I Still Have to Meet the Non-Medical Disability Requirements?

Even though you've been diagnosed with SPS, a compassionate allowance condition, you must still meet Social Security's basic requirements for disability:

• your medical condition must prevent you from working at the substantial gainful activity level (approximately $1,500 per month), and
• your condition must have lasted or be expected to last at least 12 consecutive months.

You must also meet the non-medical requirements for the type of disability you're applying for. SSI and SSDI have different legal and financial requirements.

To be eligible for SSDI, you must have worked and paid Social Security taxes (FICA or self-employment tax) for a substantial amount of time and recently enough to be currently insured under the program. You must also have the appropriate citizenship or immigration status and residency.

SSI is a needs-based program, so there's no work requirement to be eligible for disability benefits. But SSI is only available to those with low incomes and limited resources. SSI also has citizenship and residency requirements that differ from SSDI's requirements.

Learn more about the non-medical requirements for Social Security disability.

Contact a Disability Attorney

If you have questions about whether your SPS qualifies you for automatic benefits under Social Security's compassionate allowance program, it might be helpful to speak to an experienced disability attorney.