In a follow-up appointment with the neurologist a couple days after the Solu-Medrol course had ended, the doc said that he would like to do a follow-up MRI in three months. Then he asked if treatment had been considered. “Why would I want to do that? Give myself shots every day? I don’t even have MS!” The doctor said that it was his choice and that he would see him in three months.
My relative didn’t have any more lesions on the follow-up MRI and three years later, has not had another episode.
Curious to learn more about recommendations for monitoring and treating people after a CIS, I looked it up on UpToDate -- an electronic reference used by many physicians and patients looking for in-depth medical information.
See what UpToDate has to say, then read on for answers to questions you may have about what all of this means for you.
Recommendations for Monitoring People After a CIS: Information from UpToDate
"All patients who present with a CIS should have T2 and gadolinium-enhanced brain MRI studies as part of the initial evaluation.
- If the initial brain MRI is abnormal (with a demyelinating lesion), the likelihood of developing MS is 60 percent, and treatment with a disease modifying agent should be started.
- If the initial brain MRI is normal (no demyelinating lesion), the likelihood of developing MS is 20 percent, and a repeat brain MRI should be obtained between three and six months.
- If the three to six-month brain MRI is abnormal, treatment with a disease modifying agent should be started.
- If the repeat MRI is normal, further scanning is not recommended in the absence of new symptoms."
Your Questions: AnsweredFully understanding all of this will not only give you a better grasp of what is going on, but it will help you be better able to discuss your situation with your doctor.
What Exactly is a CIS?The term “clinically isolated syndrome” (CIS) refers to an “attack” that has one or more symptoms resembling multiple sclerosis (optic neuritis, numbness and tingling, weakness) that lasts for at least 24 hours in someone who has not been diagnosed with MS (it cannot be called a "relapse" because it is the first time that it is happening).
What Is the Difference Between a CIS and MS?Since multiple sclerosis means multiple areas of damage (“sclerosis” literally means “scarring” or “hardening”), there used to be two basic rules for diagnosing MS:
- The person must have had at least two attacks (an episode where MS symptoms were present), separated by at least one month.
- There must be more than one lesion on the brain or spinal cord.
This would mean that after a CIS (considered the first attack), the person would have to wait for more symptoms to know if they had MS.
However, now that MRI scanners are more widely available, the can be used to confirm symptoms after one attack, according to the McDonald criteria, a set of standards that incorporates the use of MRI scans.
Basically, the McDonald criteria state that in the case of only one attack (a CIS), MS can be confirmed by:
- Dissemination in space by two or more MRI lesions consistent with MS and
- Dissemination in time by MRI or 2nd attack
While this sounds very similar to the above “rules” for diagnosing MS, there is one very important change: “dissemination in time by MRI” means that if a person only has one attack and there is a lesion (or more than one lesion) on an MRI, a second MRI can be performed three months later. If a new lesion appears, this can be used to diagnose MS, without waiting for a second attack.
Why Should I Start Treatment with a Disease-Modifying Drug If I Don’t Even Have MS?A high proportion (between 60 and 80 percent) of people who have a CIS accompanied by MRI lesions go on to develop multiple sclerosis eventually. Many experts believe (and research supports the idea) that if disease-modifying therapies are started early, it will prevent much of the disability that occurs at the very early stages of MS. In the case of the interferon drugs, it has been shown that these delay the occurrence of a second attack for up to two years.
When most people get diagnosed with MS, the disease process has already been active for some time (often several years) and damage has accumulated that may not show up yet as disability (or be very vague or subtle, like increased cognitive dysfunction, fatigue or heat intolerance), but might pop up later when damage hits a “critical mass.” By starting the therapy using the above criteria, much of this “silent” damage might be stopped and disability prevented.
Which Disease-Modifying Drug Would I Take?At this time, Avonex, Betaseron and Copaxone are approved for use in people after a CIS if MRI scans show features consistent with MS.
What If I Don’t Want to Start a Disease-Modifying Drug?It’s a matter of personal choice and strategizing with your doctor. The studies are showing that while treatment seems to delay a second clinical attack (and the diagnosis of “clinically definite MS”), the overall impact of early treatment on disability was very small -- less than half a point on the Expanded Disability Status Scale (EDSS). However, in these studies, there was a significant reduction of brain atrophy in the treatment groups. Keep in mind that these studies lasted three years or less, so that the eventual impact on disability may be greater as people are on treatment longer.
On the other hand, the treatments all require injections, and do come with a price tag (which can be hefty, but varies according to insurance coverage) and side effects.
Read more about these treatments: