Here is My Question:
Is it worth the risk to start Tecfidera when you are treated as radiologically isolated syndrome? CSF was positive for bands but everything else was normal. Also the evoked potential tests showed very minor damage to right optic nerve (which I didn't notice). I got conflicting advice. Some neurologists said wait and see, others said don't waste time.
"Radiologically Isolated Syndrome" (RIS) is an imprecise term since the word 'syndrome' literally means a group of symptoms, something presumably lacking in people with RIS. Radiological isolated MRI findings consistent with MS would be a more appropriate term. The number of individuals that we can continue to group under this designation has diminished over time with further risk factor characterization and longitudinal follow-up.
Specifically, those individuals with both enhancing and non-enhancing MRI lesions that fulfill certain specificity criteria and those individuals with MS specific T2 hyperintensities plus definite evidence of intrathecal IgG production (e.g. CSF oligoclonal bands not present in serum) both should be considered pre-symptomatic MS.
As more biomarkers are developed and validated (e.g. central vein signs, susceptibility rim lesions, quantification of myelination and axonal damage, serum neurofilament light chain measurements and measures of myeloid/microglial cell activation), further cases will no longer be considered RIS.
It is important to remember the goal of these classification criteria; by defining the term RIS we enhanced our ability to better study and understand early pre-symptomatic MS, determine if there are other conditions that cause this radiological finding, and ultimately developed further opportunities to initiate education and management earlier in the MS disease course.
I have often told patients over the years that the diagnosis of MS is probably less important than identifying risk factors and treatment modifiers that allow us to apply appropriate treatments more precisely with the lowest risk at the correct time to achieve the best outcome.
So, to your question, you need to ask (of your MS specialist), What are my risk factors, and is Tecfidera an appropriate treatment for these risk factors? Assuming your exam is virtually normal (like most RIS patients), the main addition risks factors that are readily available include:
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
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