Ask the Doctor
Questions from our Readers
By Dr. Barry A. Hendin
MSAA’s Chief Medical Officer
Q: I’m in my twenties and was recently diagnosed with MS, although I’ve been having symptoms for years. At least by getting this diagnosis, I was relieved to know there was a reason for my many problems, including dizziness, weakness, and being constantly tired. In addition to treating my symptoms, my doctor mentioned long-term treatments, but I have no idea what the best options are, or if I should even go on this type of medication.
I know I have a lot of questions, but if you can at least give me an idea of where to start and what treatments I might consider, this would be very helpful.
A: I think that anyone who has been recently diagnosed with multiple sclerosis has, and should have, a lot of questions regarding therapies. The answers should evolve collaboratively from discussions with your clinician or team of clinicians. These physicians should be your best guide and should take the time to think with you, answer your concerns, and consider your options. An excellent tool for understanding the available therapies for multiple sclerosis is MSAA’s new Ultimate MS Treatment Guide, which lists, describes, and compares all of the medications approved by the Food and Drug Administration (FDA) for the treatment of MS. To access this online, interactive guide, please visit MStreatmentguide.org.
The best long-term approach to treating multiple sclerosis is with a disease-modifying therapy (DMT) – in order to reduce relapses and disability progression – plus an emphasis on “wellness,” which includes a healthy diet, exercise, avoidance of tobacco, and maintaining good mental health and social connections.
The specific choice of a disease-modifying therapy will depend upon your discussions with your clinician. It should be comforting to know that more than 20 agents are available at the present time, with more therapies anticipated during the coming year. With such a variety of treatments available, this should allow you to find the therapy that is most compatible with your individual MS presentation as well as your individual concerns.
Q: I recently experienced a very uncomfortable and unexpected symptom of extreme pressure and tightening around my chest and ribs, making it hard to breathe and lasting for a few minutes. I thought I was having a heart attack, but the symptom subsided before I was able to call for help. I immediately consulted my doctor, who wanted me to get checked to make sure I was okay, but as my doctor suspected, this was diagnosed as an “MS hug.”
I had never heard of this symptom and am hoping I won’t have to experience it again. Do many people get this, and can you tell me what causes an MS hug? Is there anything I can do to keep it from happening again?
A: Although this was your first episode of an “MS hug,” you seem to have done everything right. You saw your clinician in order to rule out other causes. Fortunately, the episode was brief and did not require any interventions. When the episodes are brief and infrequent, a conservative approach is correct.
People can experience MS hugs quite differently. Although it is commonly experienced in the chest or abdomen, it can affect any part of the body. The quality is often one of tightness or spasm, but for some people, it can be quite painful. The episodes are generally brief and infrequent, but may occasionally be more persistent.
Various factors may be involved with the MS hug. The MS hug falls under the category of “dysesthesia,” meaning an “unpleasant abnormal sensation” in Greek. Dysesthesia in MS is caused by inflammation or injury to the nerves of the central nervous system, interrupting the smooth flow of nerve impulses and sending mixed signals to the body and its muscles. Muscle spasms around the ribs can also cause uncomfortable sensations of tightening and squeezing.
Additionally, the same triggers that cause one’s MS symptoms to temporarily worsen may also trigger an MS hug. These include conditions such as overheating, being under too much stress, being overly fatigued, or when fighting an illness or infection.
When the episodes are persistent or frequent, a variety of medications may be tried. These include baclofen, amitriptyline, and gabapentin. For most people, however, medication won’t be required.
Certain “home remedies” may also be tried to help reduce the intensity of the pain or help the body to “translate” the sensation into a pain-free feeling of pressure, but many are specific to each individual. These might include wearing loose clothing (others may find that wearing tight clothing is helpful), applying heat or taking a warm bath, or using relaxation techniques, including meditation, yoga, and deep breathing. Lifestyle changes such as avoiding stress, treating an infection or illness, eating a balanced diet and drinking enough water, staying cool, and getting plenty of rest – may help prevent or minimize an MS hug.
For more information, please visit this section of MSAA’s website at mymsaa.org/ms-hug.
Q: My husband has secondary-progressive MS and recently started having trouble while eating. He often coughs or even chokes a bit not only with food but also with any liquid he drinks – including water. Are there any treatments that can help this problem, and is there anything I can do to make eating more comfortable for him? I’ve also heard he can get some kind of pneumonia from coughing or choking while eating or drinking, but I’m not sure what this is.
A: Your husband’s problem is not uncommon in multiple sclerosis. People with MS may have occasional or persistent problems swallowing solids, or more frequently liquids. This is known technically as “dysphagia.” This certainly can be disconcerting when it does occur.
You are correct that it can increase the possibility of a type of pneumonia called “aspiration pneumonia.” This isn’t a common occurrence, but dysphasia does increase the risk for pneumonia when food particles or liquids get into the lungs.
Sometimes the solution is as simple as cutting food into smaller bite sizes or adding thickening to liquids. Sometimes it is behavioral, and strategies such as slowing down at meals, making sure that one’s posture is upright when eating, or clearing one’s throat to eliminate retained food or liquid, can be helpful.
When the problem doesn’t resolve simply, professionals such as an ear, nose, and throat specialist (ENT) or a speech therapist can test swallowing directly and help to provide appropriate, individual therapies. It is important to remember that although swallowing problems can be disconcerting, they are treatable.
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