Getting Disability for Multiple System Atrophy (MSA), or Shy Drager Syndrome

Multiple system atrophy, or MSA, is a rare neurodegenerative disorder that affects the autonomic nervous system and gets progressively worse over time. MSA is a relatively new term for the disease. Other, older names for the disorder are:

• Shy-Drager Syndrome or Shy-McGee-Drager Syndrome
• neurologic orthostatic hypotension
• Parkinson's plus syndrome
• striatonigral degeneration, and
• sporadic olivopontocerebellar atrophy.

Whatever the name, MSA is a very serious type of autonomic dysfunction that eventually leads to significant disability and death.

What Are the Symptoms of Multiple System Atrophy?

The symptoms of MSA that can be disabling include:

• blood pressure changes, especially upon standing (orthostatic hypotension)
• incontinence or other bladder or bowel issues
• balance and coordination issues, sometimes causing falling
• dizziness
• slowed movement (bradykinesia)
• muscle rigidity and postural instability
• action tremor (shaking when you use a body part), and
• voice changes or unclear speaking.

Currently, there is no cure for MSA.

What Types of MSA Are There?

The two main types of multiple system atrophy are:

• MSA-P (predominant Parkinsonism). The more common type of MSA, MSA-P is similar to Parkinson's disease and causes symptoms like stiffness, bradykinesia, tremors, and problems walking.
• MSA-C (with cerebellar features). This type of MSA is characterized by cerebellar ataxia, which causes a lack of ability to balance and coordinate movements as well as issues with eye movements and speech.

Eventually, most patients with MSA-P or MSA-C will develop both cerebellar issues and parkinsonism.

How Is MSA Diagnosed?

There is no specific test for multiple system atrophy, and it's often confused with Parkinson's disease because of the similarity of some of the symptoms. However, MSA is distinct in that it causes damage to the autonomic nervous system, which controls bodily functions such as heart rate, blood pressure, digestion, and bladder functioning.

Diagnosis of multiple system atrophy is based primarily on doctors' observations. However, a brain MRI showing abnormalities in the striatum, pons, and cerebellum can be highly suggestive of MSA.

In evaluating whether you're disabled due to MSA, the Social Security Administration (SSA) will look for:

• clinical evidence of autonomic system dysfunction
• your response to treatment
• neurological reports, and
• evidence of limitations on your activities of daily living (ADLs) submitted by a relative or caregiver.

Does My MSA Diagnosis Qualify Me for Disability Benefits?

In order to qualify for benefits under either Social Security Disability Income (SSDI) or Supplemental Security Income (SSI), you must have a disability that has lasted or can be expected to last 12 months or more (or result in your death).

Social Security will evaluate whether you have a disability in one of three ways. You have to either meet "meet a listing" or "equal a listing," or your impairments must make you unable to do your previous or any other work for which you're qualified. And because of the severity of the disorder and its poor prognosis, Social Security has identified MSA as one of the medical conditions that can qualify for a fast-tracked approval under the Compassionate Allowance program.

Do I Meet a Listing for MSA?

Social Security has a list of impairments that are automatically considered disabling, if your medical records contain certain symptoms and test results. There is no specific listing for multiple system atrophy, but Social Security usually evaluates MSA under the disability listing for Parkinson's disease.

To qualify for benefits under the Parkinson's listing (11.06), your medical records must document one of the following:

• The inability to control both of your legs or both of your arms (or an arm and a leg), despite at least three months of treatment. You must have extreme difficulty in:
  • balancing while standing or walking
  • standing up from a seated position, or
  • using your arms.

OR

• "Marked" (serious) physical problems along with a "marked" limitation in any one of the following:
  • thinking (understanding, remembering, or applying information)
  • interacting with others (having social problems)
  • finishing tasks (problems with concentration, persistence, or speed), or
  • managing yourself and your emotions (adapting to change and taking care of yourself).

Does My MSA Equal a Listing?

If you don't meet the specific criteria described in the Parkinson's listing, Social Security can still find your condition disabling if your symptoms are as severe as the symptoms required in another of Social Security's listings. Since MSA affects many bodily functions, Social Security might evaluate the severity of your disability under several other listings:

• If your MSA impacts your cognitive abilities, such as significant memory impairment or disorientation to time and place, you might equal the listing for neurocognitive disorders.
• If you have severe problems with communication or movement, you might be able to equal the listing for vascular accident (stroke).
• If your MSA has caused damage to your vision, Social Security might also evaluate you under the listing for visual disorders.

Can I Prove Disability If I Can't Work Due to Other Problems?

If you don't meet or equal a listing, Social Security will examine how multiple system atrophy impacts your ability to work. You can still qualify for disability benefits if you can show Social Security that you're unable to return to your past job—or any other work for which you're qualified.

Since MSA affects so many bodily functions, you may have many types of issues that impact your ability to work. But whether you're found disabled will depend on how far the degeneration has progressed. Social Security will record your current limitations on a residual functional capacity (RFC) form and then use the form to decide whether you can work. The following limitations could keep you from working:

• If you have significant balance and coordination issues, there may be a safety issue in the workplace that would make it impossible for you to return to work.
• If you have significant cognitive decline, you might be unable to concentrate on tasks in the workplace or even remember what you're supposed to do.
• If you're experiencing significant muscle rigidity, making fine and gross motor coordination difficult, there are very few jobs you can do without the use of your arms and hands.

If limitations like these are well established in your medical records, you have a good chance of getting your claim approved.

Because MSA is generally found in adults aged 50 and above, it can be relatively easy to prove you have too many limitations to do your past job. And when you're older than 50, Social Security takes into account your age, education, and job skills (using the medical-vocational grid rules) to determine whether there's any other easy type of work you can learn to do. The older you are, the less likely Social Security will expect you to switch to a type of job you've never done before.

But for an applicant younger than 50, the agency will generally need to see that you can't do any simple sit-down job.

How Do I Apply for Disability Benefits for MSA?

An easy way to start your disability application is to file online with Social Security. You don't have to finish the application all at once; just make sure that you keep track of the application number given to you when you start the application so you can access it again if you need to come back to it.

You can also apply for disability benefits over the phone by calling the SSA at 800-772-1213. If you're deaf or hard of hearing, you can call the TTY number at 800-325-0778.

Finally, you can apply for disability benefits in person at your local Social Security field office. You can locate your field office here.

_{Updated September 29, 2023}