Prodromal multiple sclerosis is being discussed on blogs, twitter and among patients and families. They often discuss symptoms like fatigue, headache, poor sleep quality and decreased concentration. Multiple sclerosis experts have also been interested in these symptoms since we know environmental factors are important in risk of developing multiple sclerosis.
We know that having mononucleosis and therefore Epstein Barr virus at a later age, adolescent obesity, smoking, low vitamin D levels, being female and Caucasian and having certain genetic factors increase risk of developing multiple sclerosis.
Since many patients now get MRI scans for unrelated problems, we have seen patients who have MRIs that look like typical MRIs of someone who has multiple sclerosis but has never had a symptom consistent with the disease process. We call these patients radiographically isolated since they have never had a symptom and just have demyelination on a scan.
These patients have now been followed in cohorts for over 10 years. We wanted to know what would happen to these patients over time.
There is an international study of 451 people from 5 countries, mainly Caucasian with mean age of 37 yrs. 40% got MRI for headache, 8% for trauma and 3% for family hx
At 5 yrs. 34% had first symptom consistent with MS. Risk was increased in males and younger people but mainly in people with spinal cord lesions.
At 10 yrs. 50% had their first symptoms, still most commonly in patients with spinal cord involvement, male sex, younger age, and now oligoclonal bands in spinal fluid
So having radiographically isolated syndrome is certainly a risk for developing multiple sclerosis but at 10 years half of patients will get their first symptom.
We are not sure if starting medication earlier will make any difference in clinical course for these patients.
There are several clinical trials that may be coming out soon looking to see if treating these patients before they have symptoms delays onset of symptoms. Whether there were enough patients in trials to see effect, we will have to wait and see.
At the present time we recommend frequent follow up MRIs and close symptom monitoring for these patients.
If they develop symptoms and active lesion, we know medications help then. Hopefully we will have new information soon. It will teach us all about the prodrome!
Nancy Nealon, MD