Being diagnosed with multiple sclerosis (MS) is a multi-step process that can take anywhere from days to years. Unfortunately, MS is not a condition where you walk into your primary care doctor’s office because of unusual symptoms, and you walk out of the office with a definitive diagnosis. Reporting your symptoms to your doctor is only the first step.
Step one: Early symptoms and preliminary tests
The neurological exam is the first step in trying to solve the mystery as to whether MS might be the cause of your symptoms. The doctor will look for signs to indicate that something may not be functioning as expected within the central nervous system (CNS) that includes the brain, spinal cord, and optic nerves.
To help eliminate potential causes of symptoms, your doctor may order some preliminary blood tests to rule out conditions such as vitamin B12 deficiency, lupus, autoimmune disease, Lyme disease, syphilis, or HIV. If the results come back normal, your doctor may then order an MRI of the brain and/or spinal cord.
It may take days to be scheduled for MRI, depending upon the availability of the testing facility, and an additional day or two for the radiologist’s report to be delivered to your doctor. Based upon the results of the MRI, your doctor may refer you to a neurologist for consultation. Be sure to always ask for copies of the final report and images for your records.
Step two: The neurologist and specialized tests
The neurologist will conduct a thorough neurological exam, take a complete medical history, ask about your symptoms, and review the results of your prior tests. The neurologist may then order additional laboratory tests and another series of MRIs conducted with protocols specific for MS. If results of these tests are inconclusive, your neurologist might order additional tests, such as evoked potentials (EP) or analysis of cerebrospinal fluid. Each of these tests can take time to schedule and results may not be available immediately.
Step three: Diagnostic criteria
The MRI exams are used to detect inflammation, demyelination, and/or anatomical changes that contribute to symptoms. Although MS is a demyelinating disease of the central nervous system, evidence of inflammation or demyelination is not enough to diagnose the disease with certainty.
To diagnose MS, there must be evidence of damage in at least two areas of the CNS, AND, evidence that the damage occurred at different points in time at least one month apart, AND all other possible diagnoses must be ruled out. The 2010 Revised McDonald Diagnostic Criteria incorporates guidelines that make it possible to diagnose MS without waiting for a second relapse or attack which can potentially speed up the diagnosis process significantly.
Step four: The long or short road to diagnosis
I asked our Facebook community, “How long did it take you to be diagnosed with MS?” The responses demonstrate the wide variety of time it takes for many to be diagnosed. Jerry developed optic neuritis and was diagnosed three days after being referred to an eye doctor. Sarah’s diagnosis took about one month, Kerry’s took four months, Stephanie’s nine months, and Ann’s eight years. My own diagnosis took 5.5 years.
For patients who do not clearly meet diagnostic criteria, the diagnosis of MS may take a long time. Patients with clinically isolated syndrome — a single MS-like attack without evidence of CNS demyelination that occurred in two or more locations and at two points in time — may never experience a second demyelinating event and thus not be diagnosed with confirmed MS.
Step five: Avoiding misdiagnosis
Neurologists, even those who specialize in MS, may be cautious about making an official MS diagnosis to avoid exposing the patient to the dangers of misdiagnosis. Misdiagnosis means the patient may suffer from an undiagnosed, untreated condition that could lead to unnecessary risk and even death. The patient may be unnecessarily exposed to potentially harmful therapies and be burdened with the financial risk of expensive medications, routine imaging, and clinical care they don’t need.
As much as we want answers to explain our symptoms, it is important to consider that the answer may not come easily or quickly. No matter how many symptoms you have that seem to point to MS, it might not be MS.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.