Ask the Doctor
Questions from our Readers
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: My MS is 24/7, and I experience problems with my legs, my hands, foot drop, balance, pain – you name it… every flare is always a bad flare. In looking at my paperwork from my doctor, it always says relapsing-remitting MS with “progressive features.” I’m confused. Isn’t this primary-progressive MS?
A: Unfortunately, too many people with MS experience problems “24/7.” A lot of our attention as clinicians has been on disease-modifying therapies, which is vitally important, but this may result in our giving too little of our attention to day-to-day issues that affect quality of life.
Of course, there are wellness programs to improve quality of life and medications to address specific symptoms. An important element in fully addressing care for people with a heavy burden of disease should be a physiatry evaluation. A physiatrist can create a program that may include physical therapy, occupational therapy, or speech therapy to address specific problems of day-to-day function and well-being.
Feeling better today and protecting function for the future often involves a team rather than an individual. Depending on the circumstances, areas of treatment may also include pain management, psychiatry or psychology, and urology – in addition to seeing your neurologist.
The distinction between primary-progressive MS versus relapsing-remitting MS can be confusing. Relapsing-remitting MS generally begins with an acute event, such as a change in vision or sensation or motor function. Primary-progressive MS is usually more gradual in its onset. Relapsing forms of MS also have the hallmark feature of flare-ups – with periods of sudden and sometimes severe symptom worsening, followed later by a full or partial recovery. Progressive forms of MS can occasionally have a flare-up, but in general, progressive forms exhibit a slow but steady worsening of symptoms.
People with relapsing forms of MS may also experience progression. When the worsening is associated with an attack or relapse, we refer to it as relapse-associated worsening (RAW). When the progression is not associated with a relapse or acute inflammation, we refer to it as progression independent of relapse activity (PIRA). We are fortunate to now have a number of highly effective medications that reduce acute relapses, which in turn reduce progressive disability caused by relapses, or RAW. Reducing progression independent of relapse activity, or PIRA, has been a more elusive problem. A great deal of research is being done at the present time to address this unmet need.
Q: What are the types of vision problems that can occur with MS and what is optic neuritis? How are these types of symptoms treated?
A: Vision problems are common in people with MS. The types of problems may relate to the optic nerve (optic neuritis) or to the control of eye movements (double vision and nystagmus).
Optic neuritis is one of the most common presenting symptoms of MS and it may occur in up to 50% of people with MS during their lifetime. The cause is inflammation and demyelination of the optic nerve. Symptoms vary but are often described as blurriness or a “spot in my vision.”
Optic neuritis usually occurs in one eye but can occur in both. Often, but not always, optic neuritis can be associated with discomfort or pain with eye movement. The most common treatment is steroids, given over a three-to-five-day course. Once the inflammation has subsided, this usually results in a return to normal or near-normal vision.
MS can also cause abnormalities in the control of eye movements. If this affects an individual nerve or muscle, the result may be double vision. Alternatively, the problem with control of eye movement may cause an abnormal movement of the eye called nystagmus, and this can be associated with “jiggling” of the eye and a perception of movement or “jiggling” of the environment.
In some instances, double vision and nystagmus can occur simultaneously, producing a picture that we call intra-nuclear ophthalmoplegia. Acutely, these may also be treated with steroids, though these problems can sometimes resolve spontaneously over time. A referral to an ophthalmologist or neuro-ophthalmologist is sometimes needed for more specialized treatments, including special lenses to reduce double vision.
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