8 Questions You Need to Ask About Clinically Isolated Syndrome (CIS)
If you’ve just been diagnosed with clinically isolated syndrome (CIS) or you’re looking for find out more about CIS, there are 8 questions you need to ask to make sure you’re able to get the best outcome in the long-term.
What is CIS?
The term clinically isolated syndrome (CIS) describes an episode that occurs in the central nervous system (CNS) (i.e., brain and spinal cord) that may or may not be an early sign of multiple sclerosis (MS). A CIS involves MS-like signs and symptoms that are thought to be the result of inflammation and/or demyelination (loss of the myelin that covers the nerve cells) in the CNS, including the optic nerve and brain stem. As in MS, symptoms occur because normal transmission of nerve impulses is disrupted. To be considered CIS, symptoms must last at least 24 hours.
The episode of symptoms may be caused by one or several lesions (demyelinated areas) in the CNS; a CIS may involve a single symptom or a combination of symptoms, depending on the nerves affected. They may include “invisible” effects that only you are aware of such as changes in vision, cognitive disturbances, pain, extreme fatigue, abnormal sensation, bowel/bladder problems and heat sensitivity. CIS may also involve visible symptoms including balance and coordination problems, tremor and muscle weakness or stiffness.
What is the difference between CIS and MS?
Based upon clinical symptoms alone, CIS and MS appear the same. However, definite MS can be diagnosed only after occurrence of a second episode of MS-like symptoms (or magnetic resonance imaging (MRI) signs) that meet specific diagnostic criteria. It is not possible to predict with certainty if an individual with CIS will develop MS. Studies show that 85% of individuals with clinically definite MS initially had CIS.
How is CIS diagnosed?
Diagnosis of clinically isolated syndrome (CIS) is based mainly on clinical findings, including your reports of “invisible” symptoms. Your physician must also rule out other conditions that may mimic CIS . An MRI scan is performed to look for signs of inflammation and demyelination (i.e., lesions) in the CNS.
What does a CIS mean for me?
For many individuals, CIS predicts a second attack of symptoms that confirms the diagnosis of MS. This possibility is difficult to come to terms with. However, experts who treat MS believe CIS presents a valuable window of opportunity – the chance to set in motion the tests and imaging studies that can rule out or confirm MS sooner rather than later. Taking action is one way to manage the anxiety of waiting for a final diagnosis.
An individual’s level of risk can be suggested based on findings of an MRI scan performed at the time of the CIS. Those with no lesions detected on MRI are at low risk of developing MS; risk increases with the number of lesions detected. Trials of CIS patients with two or more lesions on brain MRI (which were not causing symptoms) found that over the following 2 to 3 years, 45% to 50% of patients had a second attack (i.e. met the clinical criteria for MS).
Why is MRI so important?
As explained above, conventional MRI scans of CNS lesions at the time of a CIS can be used to predict an individual’s future risk of developing MS. While this baseline MRI provides valuable information on its own, it appears to be even more helpful when compared to subsequent MRIs. An MRI could be repeated yearly or at any time that new symptoms occur.
Traditionally, the potential rate of progression is predicted using MRI measures of lesions in the CNS. Recent research suggests that MRI assessment of brain tissue loss (atrophy) may provide a more complete assessment of disease progression than lesion measures. While the amount of tissue in everyone’s brain declines with aging, this brain atrophy occurs during the earliest phases of MS, and progresses faster in people with MS versus those without MS. When compared with previous MRI measurements, the extent of brain atrophy seen on MRI is closely linked with disability. The change in brain volume that occurs during the first year following a CIS may help predict level of disability 6 years later.
Can CIS symptoms be treated?
Immediate treatment of a CIS is similar to treatment that may be used for an MS exacerbation. People are often given intravenous glucocorticoids, which may or may not be followed by a regimen of oral steroids tapered over several days or weeks to reduce inflammation and speed recovery.
Why is it important to start disease modifying treatment early?
We now know that multiple sclerosis (MS) involves ongoing accumulating damage, and that disease experience during the first few years is likely to have a significant impact on the long-term evolution of MS. Results of well-designed clinical trials indicate that the early and ongoing use of any of the 4 approved disease modifying therapies (DMTs) – the beta interferons and glatiramer acetate – can delay the occurrence of a second neurological event.
In individuals who have experienced a CIS, DMTs have been shown to decrease progression of disability by up to 40%, and reduce the likelihood of developing clinically definite MS (CDMS) (defined as a second clinical attack) by up to 50% compared with placebo. In other words, in those who developed CDMS, it took twice as long to emerge in treated individuals than in those not receiving treatment.
That said, not everyone with a CIS needs to start a DMT. Treatment should be postponed in patients who do not have brain or spinal cord lesions, because these individuals have a low risk of experiencing a second attack. It should also be postponed for those in whom other diagnoses cannot be adequately excluded.
Therapy may be considered in individuals with clinically isolated syndrome (CIS) if:
- the patient has experienced a documented neurological episode that is characteristic of central nervous system demyelination.
- there is “no better explanation” for the neurological presentation.
- the patient is deemed at high risk of having another attack.
- the first attack has occurred within the past year.
Who can I turn to for help with CIS?
See your doctor
If you think you may have experienced a CIS, don’t assume that all is well because the symptoms pass. Disease activity persists even when no symptoms are occurring. See your doctor. If it is a CIS, time is on your side – early diagnosis and treatment offer the best long-term outcomes.
A dedicated nurse is here for you
Connect one-on-one with a dedicated nurse at Shared Solutions. Shared Solutions is a free service that will support you by answering your questions and helping you manage your CIS.
Find out more about Shared Solutions.
Share with others just like you
Sometimes, nothing can compare to finding someone who knows and understands exactly what you’re going through. Support websites like MSWatch.ca can help you find and speak with others just like you. Ask your questions on the MSWatch forums and help others by sharing your story.
Visit the MSWatch.ca forums.