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Connection is key to supporting multiple sclerosis patients

Article-Connection is key to supporting multiple sclerosis patients

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While virtual options to connect exist, dexterity and cognitive issues can prove a challenge for MS patients, says neurologist Eoin Flanagan.

Multiple sclerosis (MS) affects an estimated 2.8 million people all over the world (35.9 per 100,000 population). Since 2013, prevalence has grown in every region worldwide. The average age of diagnosis is 32 years, and the pooled incidence rate across 75 reporting nations is 2.1 per 100,000 people each year. MS furthermore impacts twice as many women as it does men.

Raising awareness, World MS Day’s (30th May) theme for 2022 is ''I Connect, We Connect'' (#MSConnections), focusing on building community connection, self-connection, and connections to quality care.

In this interview, Eoin Flanagan, Neurologist – Mayo Clinic, explains that community connection is of great importance for multiple sclerosis patients.

In his view MS patients have faced significant challenges during the COVID-19 pandemic - including isolation. They have struggled with travelling to support meetings, and while virtual options exist, dexterity and cognitive issues can make connecting more challenging.

Nevertheless, ways of treating patients through increased access to home infusions are being found, according to the neurologist. 

“We need to continue to ensure that patients connect with each other through their local MS Society. Many of my patients have found answers to questions from support groups and have shared some of these ideas with me, which I have subsequently passed on to my other MS patients.

In addition, the virtual environment has enabled us to connect with more patients in their home with the benefits of reduced costs of transport to and from outpatient clinics, lost time in transit and has been very helpful for patients with mobility limitations,” he says.

Excerpts below:

What have been the latest advancements in MS care, and are there new technologies that have improved management for patients?

We have made great advances in terms of available medications to treat multiple sclerosis. Currently, we can do a very good job of dampening down the inflammation component of multiple sclerosis with a wide array of highly effective approved medications that can successfully reduce relapses and prevent new scars from developing on MRI.  However, we have fewer effective medications for the progressive forms of the disease, and this remains an area of major focus in the MS field.

We in the MS field are embracing technology. For example, at Mayo Clinic we now have a more sophisticated way that we can monitor a patient’s walking, in which they will come and walk on a special digitised floor mat that can measure all aspects of their walk to determine if they are having any progression of their disease that we may not be able to see through our neurologic examination. 

In addition, it can highlight the parts of walking that have been affected so we can better tailor the rehabilitation aspects.

Furthermore, we now often monitor the patient's optic nerve thickness with a technique called optical coherence tomography (OCT). This can measure any microscopic optic nerve damage that is occurring in our MS patients and gives us another way of measuring progression. 

A blood test called neurofilament light chain (Nfl) has been shown to have value in assessing inflammation levels and treatment response. All these measures - what we call biomarkers - can help us assess how our patients are doing and when we need to adjust treatment. 

Also, wearable devices and smart phone applications are now available to help track and monitor MS symptoms.

Finally, we are beginning to use artificial intelligence with MRI to help distinguish multiple sclerosis from other diseases. Machine learning and artificial intelligence can help identify new areas of inflammation and count new lesions as well as better measure brain volumes. This might give us an opportunity to intervene earlier with more effective medications in those that are developing more damage, particularly as some of these changes may not be visible using conventional MRI.

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Eoin Flanagan, M.B., B.Ch., Mayo Clinic neurologist

MS symptoms can be present early on for some patients since childhood. However, the diagnosis may not be made until later in life. What are the challenges faced by patients, and what are the key indicators physicians and patients with MS need to take into account?

Early diagnosis is key! We now have very effective medications that can stop MS in its tracks, and it is crucial that the diagnosis is made early so that long-term damage can be prevented. Most often, multiple sclerosis symptoms arise in the form of an attack, and these episodes generally last longer than 24 hours.

The typical symptoms include numbness on one side of the body or extending from the feet to the trunk, vision loss with pain moving the eye, double vision or severe imbalance. The symptoms will often reach a peak within a month and then began to resolve over subsequent weeks to months, hence the term relapsing remitting multiple sclerosis.

Rarely, MS patients can present first with dragging of one leg, which worsened slowly over months to years, and this form is termed primary progressive multiple sclerosis. If any of these aforementioned symptoms develop, it is a good idea to try and visit with a neurologist where findings on examination can help make the diagnosis.

One of the challenges that patients sometimes face is that milder symptoms of numbness may be dismissed as not something that needs to be investigated further. This can lead to a missed opportunity for early treatment, and that delay in diagnosis can lead to permanent long-term damage.

MRI of the brain and spinal cord are crucial for making the diagnosis of MS. If the MRI is abnormal, a spinal tap can also help with the diagnosis. Finally, because some of the aforementioned symptoms can occur with other conditions such as migraine, it is also important for careful interpretation of the symptoms and MRI changes to avoid incorrectly making a diagnosis of multiple sclerosis when there is an alternative explanation for the patient's symptoms. This is increasingly recognised to be an issue that neurologists encounter.

Mental wellness is a challenge. What are the changes a patient undergoes, and how can better support be created for them?

Patients with multiple sclerosis are at increased risk of developing depression and certain aspects of the disease such as decreased mobility can increase the isolation and worsen the symptoms.  Hence, keeping up connections with family and other supports is essential to improve mental health. 

Exercise is very useful in helping maintain mental wellness, and there are strategies that can be used for patients who have limitations in that regard. For example, sometimes rather than using a regular bike we recommend a recumbent bike if imbalance is present. 

Multiple sclerosis requires a multidisciplinary approach, and we work closely with our psychiatrists and neuropsychologists to help manage these symptoms. Indeed, some of the medications that we can use to treat depression or anxiety can also help with nerve pain and sleep, and we will often choose medications that work for multiple symptoms. 

Finally, multiple sclerosis patients should try to engage with their local multiple sclerosis society, support groups and share their experiences with other patients, as this is often very beneficial. It is crucial for patients to bring up any mental health concerns that they have with their physician and similarly for physicians to ask about such symptoms routinely as such symptoms may not be brought up by the patient but are very common in multiple sclerosis and reduced quality of life significantly. These symptoms are things that we can manage well once we identify them.

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