If you’ve been diagnosed with Clinically Isolated Syndrome (CIS) you may be wondering what it is, if it means you have multiple sclerosis, or whether you may develop MS in the future. That’s why we created this guide to help you understand your diagnosis of Clinically Isolated Syndrome.
Clinically Isolated Syndrome (CIS) is the term used to describe a first episode of neurological symptoms caused by inflammation and damage to the protective covering of nerve fibres (myelin) in the central nervous system. This episode must last at least 24 hours and not be caused by fever, infection, or another known cause.
CIS can be a single event, or it may be the first sign of a chronic condition like multiple sclerosis (MS). Not everyone who experiences CIS will go on to develop MS, but understanding the condition, its symptoms, and treatment options can help you take informed steps toward managing your health.
So, how is Clinically Isolated Syndrome (CIS) diagnosed?
You can be given a diagnosis of CIS from a neurologist if you’ve had one episode of MS-like symptoms and an MRI scan of the brain and/or spinal cord, detects damage (lesions) suggestive of MS.
These should be part of a number of tests that are used to rule out other potential causes. For example, a doctor may examine your neurological system, including eyesight, reflexes and balance, as well as checking blood markers to exclude infection or vitamin deficiency. They may also perform a lumbar puncture to test fluid from around your spinal cord.
Fewer diagnosis of CIS have been made since 2017 as the diagnostic criteria of MS has changed. In particular, if doctors can see older lesions on your initial MRI scan they are more likely to diagnose it as multiple sclerosis – even without previous noticeable symptoms.
Symptoms of CIS vary depending on which part of the central nervous system is affected. They often come on suddenly and may include:
With CIS these symptoms may resolve over time, especially with early treatment by adopting lifestyle changes and using the right medications in consultation with your healthcare professional.
A short course of steroids can help if symptoms are particularly troublesome, like if your eyesight or motor skills are affected then they will dampen down the inflammation that occurs. Steroids are used in the short-term and reduce recovery time, but don’t appear to affect whether you develop MS in the longer term.
In order to improve your symptoms, and to help reduce the possibility of a multiple sclerosis diagnosis, we recommend following the Overcoming MS Program’s lifestyle pillars, to help you live a healthier life. These pillars include:
MS Prevention for family members
The main difference between Clinically Isolated Syndrome (CIS) and Multiple Sclerosis (MS) is the presentation of symptoms as a one-time only episode and that MRI scans have not revealed any historic MS activity.
If you’ve been diagnosed with Clinically Isolated Syndrome (CIS), it means that at present you don’t meet all the criteria for a multiple sclerosis (MS) diagnosis.
However, doctors now understand that for many people, it can be the first sign of MS. If similar symptoms happen again, a diagnosis of MS is likely – this does not mean everyone with CIS will go on to develop MS (Risk is 30-70% depending on lesion load).
After your CIS diagnosis, your neurologist may arrange regular check-ups to monitor whether it progresses to MS. They’ll let you know how often these reviews will take place—often once a year. You should also be given information about CIS and told who to contact if your symptoms worsen or if you experience new ones.
There are a few markers that will indicate to your neurologist whether you are more likely to develop MS following a CIS diagnosis. These include:
You may also find other factors can increase your risk of developing MS, including if you are; a smoker, female, young or from a non-white ethnicity.