Ask the Doctor
Questions from our Readers
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: I was diagnosed with MS at 68 and am now 73. I have been having symptoms since my early 20s, but no one diagnosed it previously. I am told I have “inactive MS,” aka, benign MS. Doctors have taken a wait-and-see stance so far. I have developed optic neuropathy and have lost part of my sight in my right eye in the form of a grey spot. I am told the nerve cells have died and my peripheral eyesight will not return.
My question is, at which point should I be taking medication? I am being treated by my primary doctor and I am not on any medication at this time.
A: Your letter raises a number of interesting points. I will try to discuss each one.
I first want to distinguish the term inactive progressive MS from benign MS. We usually use the term benign MS to refer to people who have had MS for a long period of time such as 10 or 15 years with little or no disability. It’s a very small number of people. (I hesitate to use the phrase “benign MS,” because for so many people, even mild signs and symptoms, do not feel benign. I prefer the term “mild MS.”) Inactive, secondary-progressive MS refers to a large number of people who previously had relapsing forms of MS, and later notice progressive worsening in the absence of relapses or new lesions on MRI, for a period of time such as a year or two.
In your case, the additional question is whether at age 73 the use of our current disease-modifying therapies is approved for your type of MS and if potentially worthwhile. The commonly used disease-modifying therapies are approved for active forms of MS rather than inactive forms of MS. As people with MS age, the likelihood of a new attack or relapse diminishes, and the usefulness of our disease-modifying therapies changes relative to the risk.
It remains worthwhile to be evaluated periodically by a neurologist, and possibly an MS specialist, to see if there are any therapies or interventions for specific symptoms such as bladder dysfunction, or mood change, or gait change. Symptomatic treatment can be very important in maintaining a best quality of life, in addition to our general recommendations for a healthy diet and regular exercise.
Q: I am a 66-year-old female who has been treated for MS for 15 years. In 2001, I had an episode of double vision that put me in the hospital for three days and then resolved. My cerebrospinal fluid showed nothing. I had no other symptoms until 2005, when I had optic neuritis in my left eye and was once again hospitalized and put on IV steroids. My spinal fluid at this subsequent flare-up showed “weak” oligoclonal bands. The optic neuritis resolved and I was left with no visual deficits. Please note that I cannot have an MRI due to an old cerebral aneurysm clip (not titanium) placed in 1993.
I have been on a disease-modifying therapy for 15 years and have had no symptoms or relapses. I am a registered nurse and I plan on working until at least 70. I might have to stop my medication once I retire due to the cost. What are your thoughts on stopping my medication at that time?
A: Your question centers on when it is appropriate to stop taking disease-modifying therapies. There is good evidence for initiating disease-modifying therapy as soon as possible after a diagnosis of MS or clinically isolated syndrome (CIS). It is less clear when people should stop their medications.
As people with multiple sclerosis age, the degree of immune inflammation generally decreases, so that there are fewer relapses and fewer new brain lesions. There is an important trial currently underway at the University of Colorado, under the auspices of Dr. John Corboy, to determine the age at which stopping or de-escalating disease-modifying therapy is warranted. The results of this trial will tell us about risk and benefits in specific MS populations, however, the advice for an individual, though better informed, still requires the consideration of other factors specific to that individual patient.
A second interesting point is your diagnosis of MS without an MRI scan. It reminds me that neurologists, myself included, were diagnosing MS before the advent of MRI scanners. Although MRI scans have been very useful in validating a clinical assumption of multiple sclerosis, you do meet the requirement of “dissemination in time and space,” even in the absence of an MRI. Dissemination in time and space may be simply defined as attacks or relapses occurring in different parts of the brain, spinal cord or optic nerves at different points in time.
Ultimately, advice for any individual will need to be based on your unique discussion with your neurologist.
Q: I have MS. I have had two immunizations – one for the flu and one for tetanus – and in both cases, my optic nerve was affected and I lost my sight. After receiving large doses of steroids, I regained some sight. I have not had any immunizations since then. What should I do about COVID-19 immunization?
A: Generally, we have recommended that people with MS be vaccinated against influenza and against COVID-19. Your situation, however, is complicated and I would hesitate to give a generic answer. I recommend a consultation with your MS neurologist/immunologist. The COVID-19 mRNA vaccinations are formulated differently from your prior vaccinations and should allow for a unique discussion and decision.
Q: Are swelling and pain in the bones symptoms of MS? If so, what is the treatment for this?
A: Although many people with MS experience pain, when there is localized swelling, the explanation is generally not MS. In these situations, a medical evaluation or a visit with a rheumatologist or orthopedist is warranted. Joint swelling and pain is caused by local inflammation at the joint, which occurs in conditions such as arthritis.
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.
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