Known Myths About MS

Neurology Specialist Prof. Dr. Ayşe Sağduyu Kocaman explained 30 well-known mistakes about MS disease and made important warnings and suggestions as part of the World MS Day on May 10th.

The epidemic disease of the century, the Covid-19 pandemic, has been adversely affecting MS patients, which have become increasingly widespread both in the world and in our country in recent years. Acıbadem Maslak Hospital Neurology Specialist Prof. Dr. Ayşe Sağduyu Kocaman, stating that there are approximately 3 million MS patients in the world and 50 thousand in our country, said, “MS (Multiple Sclerosis) is a chronic disease caused by a disorder in the immune system that occurs with the effect of environmental factors on the basis of genetic predisposition and shows its effect in the central nervous system. The Covid-19 pandemic, which has been deeply affecting the whole world for about one and a half years, causes delays in the diagnosis of MS patients who experience their first clinical findings, and many wrong ideas in the society, such as the need for MS patients to stop MS drugs during the pandemic, can cause disruptions in treatment.

MS patients have a very high risk of getting Covid-19! False!

It is not true that MS is a disease that occurs as a result of the inadequate functioning of the immune system, and therefore MS patients have a very high risk of getting Covid-19, on the contrary, it occurs as a result of excessive and irregular work of the MS immune system. The immune system, whose normal function is to protect our body against external pests, damages the nerve fibers in the brain and spinal cord, which are defined as the central nervous system, that we call 'axons' and the sheath called 'myelin' that surrounds them. As a result of damage to the axon and myelin, nerve conduction slows down, and from time to time, the stimuli transmitted by the nerves cannot be detected in the tissues where these impulses turn into activity and cause neurological dysfunctions. Therefore, to treat MS, we first give immunomodulatory treatments, if we do not get the response we want from these treatments, we can switch to immunosuppressive treatments. The risk of people with MS to get Covid-19 is not different from the society as long as they pay attention to the mask, hygiene and distance rules, only on the days they take high doses of cortisone due to the attack and in the treatment areas that suppress the immune system, these rules should be paid much more attention.

It is harmful for people with MS to get Covid-19 vaccine! False!

We recommend Covid vaccine to all MS patients. Making a live virus vaccine in MS can trigger attacks, but Covid vaccines in our country are not live virus vaccines. Therefore, whichever vaccine they access, they must be vaccinated. Covid vaccines do not yet have a reported negative effect on individuals with MS, but the time of administration is important for the vaccine to be effective; In individuals receiving treatments that suppress the immune system, the vaccine may not be effective if it is not given at the appropriate time. For this reason, it is beneficial for our patients to consult their doctors about vaccination with appropriate timing.

MS patients should stop taking MS medications during the pandemic! False!

Continuous treatment of MS, especially in the early stages of the disease, is very important in terms of preventing disability that may occur in the future. During the pandemic, drug reports were extended so that the treatment could be continued without interruption, and our patients took their medications without any problems, only the application intervals of some treatments that were administered through the vascular access in the hospital and suppress the immune system were opened, and the patients were tried not to be adversely affected by the pandemic. We observed that our patients who regularly use MS medications do not experience any special problems due to their illnesses or medications, as long as they do not have obesity, diabetes, hypertension and other similar chronic diseases, even if they get Covid-19.

It is not possible to diagnose MS at an early stage! False!

MS can begin with signs and symptoms that vary from person to person. Since these symptoms can usually resolve spontaneously in the initial stages of the disease, patients' consultation and diagnosis may be delayed, whereas early diagnosis and initiation of appropriate treatment as soon as possible prevents the attack on the central nervous system and causes the protection of nerve cells and transmission extensions. This means that disability is prevented clinically. Classical symptoms of MS include decreased vision, loss of vision, diplopia, imbalance, weakness in the arm or leg or both legs, numbness, and sensory changes in the trunk. The diagnosis process begins when individuals who experience any of these symptoms consult a neurologist as soon as possible. A neurologist experienced in MS can diagnose MS clinically with a detailed history and examination. Another important rule in confirming the diagnosis is to exclude other diseases that may be confused with MS. Therefore, it is very important to evaluate the brain and spinal cord with Magnetic Resonance (MRI) imaging. In some cases, examination of the cerebrospinal fluid (CSF), electrophysiological tests and blood tests may also be required for definitive diagnosis.

There is no cure for MS! False!

Neurology Specialist Prof. Dr. Ayşe Sağduyu Kocaman “MS has become a curable disease today, but it should be kept in mind that it is a chronic disease and therefore the treatment will be long-lasting. The aim of MS treatment is to control the disease activity as early as possible, to prevent attacks and to prevent disability. A very important progress has been made in this regard in the past 15 years. We have the chance to diagnose the patient who presented to us with his first attack and to treat the attack with cortisone treatment, and then give anti-attack treatment. Therapies that change the course of MS have the greatest effect mainly in MS patients with an aggressive course and in the early stages of the disease. Therefore, patients' compliance with the treatment is very important. For each patient, we start the treatment that should be used in the long-term by making a patient-specific decision and we receive close monitoring of our patients. The first 10 years after the diagnosis is very important, it is usually clear how the disease will progress in this period. Of course, depending on environmental factors, there is a possibility of changes in the course of the disease in the second or even the third 10 years, but with close physician follow-up, we can evaluate the disease activity and make drug changes when necessary, ”he said.

It is inconvenient for women with MS to get pregnant! False!

MS, which is approximately 2,5 times more common in women than in men, occurs especially in young adulthood, that is, in the reproductive age, between the ages of 20-40. MS is absolutely not an obstacle to getting pregnant or giving birth. Of course, our patients can give birth and breastfeed with appropriate treatments that control the disease activity and with appropriate timing. The increase in our treatment options in recent years has relieved us, as well as our patients, as physicians. By planning appropriate pre-pregnancy treatment, it is possible to interrupt the immunomodulatory treatments during pregnancy and continue with the same or other treatments after the breastfeeding process is over with appropriate treatments according to the disease activity after birth. The important thing is for our patients to make pregnancy planning together with their physicians after their illness activities have subsided.

MS patients should not go out in the sun! False!

Neurology Specialist Prof. Dr. Ayşe Sağduyu Kocaman “I can say that this is the wrong belief I hear most often. Studies have revealed the importance of vitamin D deficiency as well as genetic characteristics in the formation process of the disease. In our age, especially the living conditions in big cities cause people to see less of the sun and therefore vitamin D deficiencies that we frequently encounter. The healthiest source of vitamin D is the sun. The sun does not adversely affect MS patients. In the summer, when the sun rays are steep, taking 20-30 minutes of sunlight without applying sunscreen on the arms and legs is a situation we recommend in terms of filling the vitamin D stores. Of course, those with skin cancer in their family should be more careful in this regard. "People with MS may feel more tired as nerve conduction slows down in hot environments, but this is a temporary situation and has no negative effect on the course of the disease," he says.

MS patients should avoid exercise, shouldn't get too tired! False!

People with MS may feel more tired than anyone else, but the only way to cope with this fatigue is to exercise and be active as much as possible. Inactivity affects people with MS more than anyone else. In particular, we recommend our patients with walking difficulties to stay still, walk and exercise regularly. An increase in pre-existing disability findings is inevitable in our patients who are immobile. For this reason, it is very important for individuals with MS to use the medications recommended by their physicians to prevent disability, as well as to exercise regularly, eat healthy, not gain weight and not smoke.

Every patient with MS becomes addicted to the wheelchair one day! False!

MS progresses with attacks and improvements in 85 percent of patients. In 15 percent of the cases, we see the primary progressive form of the disease, which manifests itself with gradually increasing gait and balance impairment without an attack. There have been really rapid advances in the diagnosis and treatment of MS in recent years. We can diagnose patients who consult a doctor when their complaint first appears, at the very beginning of the disease. We can control the inflammation that causes myelin destruction and axon damage in the early period in MS patients with an attack, thus there has been a serious decrease in the rate of disability compared to the past, and our wheelchair-dependent patients are really very few in our polyclinics. We see that disability can be prevented in patients whose treatment process is well managed. Unfortunately, our treatment options are still limited in progressive MS, which is a small proportion of all MS individuals. While there is a chance for new treatment options in patients who have entered the progressive phase in which clinical or radiological activity continues, we are not yet at the point where we want to be in patients with a progressive course from the beginning and without clinical or radiological activity, but many studies are continuing in this area.

MS treatment lasts a lifetime, it is not possible to interrupt the treatment! False!

MS occurs in young adulthood between the ages of 85 and 20 in 40 percent of patients. These ages are when immune responses are highest. As people get older, the activity of the disease slows down or may even disappear. Generally, after the age of 50-55, we stop and follow the treatment in patients who do not show signs of disease activity for a long time, in other words, stabilize. Sometimes the disease can be reactivated, then it may be necessary to start the medication again. In a group of patients, disease activity may disappear completely and a secondary progressive process can begin. In these patients, we need to change drugs. When we observe that the drug does not provide any benefit in patients whose treatment window is closed, we terminate the drugs affecting the immune system.