Ask the Doctor
Questions from our Readers
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: What is neurofilament light chain (NfL) technology? And how does it benefit someone with MS?
I live in Michigan where this technology is being offered, but I’m unsure if it will benefit my unique MS history. I recently had what could be a relapse, with a “faint visualization of enhancement” area on an MRI. I currently have slight balance issues after 18 years of no MS meds and my age is 61.
A: NfL (neurofilament light) is a protein embedded in the axon of the nerve cell. It is part of the skeleton of the axon, and when a nerve cell is damaged by inflammation or degeneration, it is released into the cerebrospinal fluid. Previously, the amounts were so small that it was hard to detect outside of the cerebrospinal fluid, but advances in technology have allowed us to measure it in blood. This enables us to assess injury to the central nervous system in a number of neurological disorders including multiple sclerosis. It serves as a “marker” for neuronal injury.
In multiple sclerosis, our hope is that it will allow us to provide a better understanding of prognosis, disease progression, and response to therapy. We are still early in our understanding of NfL; currently we rely on our more established marker, MRI, to assess disease activity and response to therapy. I suspect that in the future, neurofilament light will be one of many markers, to be used in combination, in order to better understand multiple sclerosis.
As all of this relates to you, I suspect that your neurologist will rely most heavily on your clinical presentation and your MRI in order to help to guide you in clinical decision making.
Q: I have had MS since 2000, but never really had any pain until March. All these years I was fine. Recently I was diagnosed with scleroderma. I was told this is a chronic condition that has no cure, just like MS.
I now have pain in my feet with no relief. My rheumatologist has prescribed Plaquenil® (hydroxychloroquine sulfate), but it takes up to six months before I can have any relief. This medication also makes me feel sick all over.
My question is, do you have any other patients with these two conditions, and if so, what medications might you have for both MS and scleroderma?
A: Like multiple sclerosis, scleroderma is an immune-mediated disorder. But it is distinct and different from multiple sclerosis. MS attacks the myelin of the central nervous system, whereas scleroderma causes thickening and scarring of skin and internal organs.
None of the approved MS disease-modifying therapies are used to treat scleroderma, but methotrexate has been used off-label to treat both MS and scleroderma. Steroids are sometimes used symptomatically in both disorders.
Q: For more than 20 years my wife has had progressive MS. She is now 80 years old and has been on Copaxone® (glatiramer acetate) since its approval. Her physician has now told her that at her age, Copaxone may no longer be beneficial. Being older, her metabolism, as well as her MS, progress at a much slower rate. I would like to have a second opinion.
A: When we prescribe disease-modifying therapies, we balance the benefit of the medication with the risk of taking the medication, which is referred to as the “risk/benefit ratio.” In general, the youngest people with MS have the highest risk of relapse and the highest levels of immune inflammation. As people age, the intensity of inflammation and risk of relapses diminishes. Simultaneously, the risk associated with MS treatments often increases with age.
When the risk of medication increases and the risk of relapse diminishes, the risk/benefit ratio changes and treatment may be less advantageous. It is difficult to state at what age any individual should discontinue medication. However, it is reasonable for people aging with MS, who have been clinically stable, to have a conversation regarding risk and benefit with their clinician to determine whether they are a candidate for discontinuation of therapy.
Q: My first symptom appeared at the age of 25, and due to a lack of awareness about MS, I went several years and visited multiple doctors before I was diagnosed with MS. Eventually, five months ago, I visited a neurologist and an MRI report showed lesions in my brain. Since then, I have been taking dimethyl fumarate and my condition is far better.
My question is, even if my condition improves, is there still approximately a 2% chance of transferring MS to my child, or could it decrease?
A: The risk of inheriting MS from a parent with MS is approximately 2%, so fortunately, most parents do not pass along an increased MS risk. This risk does not appear to vary based on whether MS is well or poorly controlled. Whether a child is already born, or parents-to-be are planning a family, the same 2% risk applies, regardless of current disease activity.
We don’t have a scientifically proven way to prevent passing MS to the next generation, but when I am asked about possible strategies, I suggest that “at risk“ children concentrate on a healthy lifestyle. This includes getting enough exercise and sufficient sunlight, while avoiding tobacco and obesity.
MS is not due to a single gene, but instead due to the imbalance between multiple susceptibility/protective genes and environmental triggers. We don’t have a current gene therapy but might possibly mitigate risk by attending to these environmental triggers mentioned.
As a reminder, we know that MS is not contagious. This is why stepchildren and non-blood relatives do not have an increased risk of developing MS.
Barry A. Hendin, MD, is a highly accomplished neurologist who specializes in MS. He is the chief medical officer for the Multiple Sclerosis Association of America (MSAA) and has spoken at several of MSAA’s educational programs. After 45 years as a neurologist with Phoenix Neurological Associates, Ltd., Dr. Hendin is now director of the newly created Multiple Sclerosis Center of Arizona. He is also director of the Multiple Sclerosis Clinic at Banner University Medical Center and clinical professor of neurology at the University of Arizona Medical School.
Please email your “Ask the Doctor” questions to askdr@mymsaa.org