Symptom Management

Understanding the Rarer Symptoms of MS

By Marion Brandis, MA, RN, MSCN

Because people with MS are not protected from acquiring other illnesses or diseases, it is very important that new or unusual symptoms be evaluated to determine if they are a part of the MS picture or are caused by some other underlying disease process. But unusual and rare manifestations can be a part of the MS constellation of symptoms, so it is important to identify management strategies where possible. While not all MS symptoms are easily treated, most can be addressed successfully with medications, or with nonpharmacological approaches and modalities that bring partial or full relief.

Trigeminal neuralgia – There is a myth that MS is a “pain-free” disease. However, neuralgias, or nerve pains, are among the more common of the rare MS symptoms. One of these is trigeminal neuralgia (TN; also called tic douloureux), which causes severe shock-like or burning facial pain lasting a few seconds or up to a few minutes per episode. It is usually felt on one side of the cheek or jaw.  Some people who experience TN may get “warning” achiness or numbness and tingling in the face before sudden onset of the episode. Pharmacologic treatment includes oral medications such as gabapentin (Neurontin), carbamazepine (Tegretol), phenytoin (Dilantin), and baclofen (Lioresal). If TN is unresponsive to these medications, a noninvasive procedure called gamma knife radiation allows intense doses of radiation to treat the targeted area while largely sparing surrounding tissues. Another option is perutaneous rhizotomy, a surgical procedure that severs the trigeminal sensory nerve.

Glosso-pharyngeal neuralgia – Related to TN is a second type of nerve pain called glosso-pharyngeal neuralgia. Resulting from damage to a cranial nerve, it is experienced as a severe pain in the tongue, throat, ear, and/or tonsils. Similar to TN, episodes last from a few seconds to a few minutes. It may be triggered by chewing, laughing, swallowing, speaking, or coughing. Pharmacologic treatments are the same as those used in TN.

L’hermitte’s sign – This is another pain problem sometimes found in people with MS. Lhermitte’s sign is a sudden “electric” sensation that shoots down the spine and legs when the neck is flexed (bent forward, as in looking down).  L’hermitte’s pain confirms that there is demyelination in the neck area of the spinal cord. Neither TN, glosso-pharyngeal neuralgia, nor L’hermitte’s sign are indications that MS is worsening. However, L’hermitte’s could be an indication of spinal cord compression, a condition not necessarily related to the MS, and for which one should be evaluated. L’hermitte’s is not usually treated, as it is transitory, though undeniably disturbing when it occurs.

Paroxysmal symptoms – Often confused with seizures, these symptoms are sudden and momentary spasms of an arm or leg, or sometimes of the muscles used for speech and swallowing. Diagnosed by electroencephalography, they are the result of abnormal electrical discharges in the brain in areas that have been damaged or are scarred.  These symptoms can be frightening, but are fairly easy to treat with one of the many oral antiepileptic medications available, such as phenytoin and carbamazepine (see trigeminal neuralgia). Seizures themselves are relatively rare in MS, with an incidence of about 2 to 5 percent (compared to the general population incidence of 3 percent).

Pseudobulbar affect – Also referred to as lability or emotional incontinence, pseudobulbar affect is characterized by uncontrolled laughing or crying that bears no relation to actual feelings or occurrences that normally trigger these emotions. For example, someone with this condition might begin laughing inappropriately during a meeting, or sobbing when watching a sentimental TV commercial. This kind of emotional lability can be embarrassing, or worse – it can cause people to isolate themselves from others.  Resulting from lesions in the areas of the brain that control emotions, lability requires understanding on the part of caregivers. Several medications have been studied for the treatment of pseudobulbar affect, including amitriptyline (Elavil), levodopa, desipramine (Norpramin), and fluoxetine (Prozac). In addition, a recent trial of a combination of dextromethorphan (found in cough syrup) and another substance that has proven effective in treating pseudobulbar affect in other diseases, is close to FDA approval for MS.

Pruritis – Another rare but not unheard of symptom of MS is pruritis (itching), which can be included in the category of sensory abnormalities known as dysesthesias. Because this type of itching is neurologically based, it does not respond to topical treatments like those used in allergic reactions. Once again, the antiepileptic medications mentioned previously (gabapentin, carbamazepine, and phenytoin) are sometimes helpful in treating this problem.

While not every new or unusual symptom that you experience will be because of your MS, be sure to consult with your MS medical provider should you develop a new problem, especially if it interferes with your daily life.  Sometimes unusual symptoms can be the result of medication side effects, so it’s important to keep a current list of medications and dosages with you at all times. Effective and timely symptom management is a key to maintaining the best life possible, and to staying active and engaged in the world, even while living with MS. 

Marion Brandis is a registered nurse and an MS-certified nurse who is currently a John Dystel MS Nurse Fellow through the National MS Society (NMSS). Prior to the fellowship, she was Program Director of Clinical Services for the NYC Chapter of the NMSS, where she designed and directed patient and professional education programs, including the nationally-recognized Janet Pearce MS Advanced Nurse Training Program. She is an active member of the International Organization of MS Nurses (IOMSN) and the Consortium of MS Centers (CMSC). She currently makes her home in Santa Cruz, CA.

(Last reviewed 1/2024)