2023-05-16 10:02:00
Tiredness, poorer vision, sexual or bladder problems. That too can be MS (Multiple Sclerosis). The neurological disorder with 1000 faces means that patients experience very diverse and often invisible complaints and therefore also need a care plan that is made for them.
In the run-up to World MS Day, MS Liga Vlaanderen and Novartis are launching the ‘Got Nerve’ activation campaign to encourage people with MS to address all aspects of their disease and thus take the lead in their care story. In addition to inspiring testimonials from MS patients, a detailed questionnaire is also offered. This offers patients guidance to thoroughly prepare for their consultation with the neurologist.
“Early detection and discussion of all possible symptoms, including the less obvious ones, is essential for rapid diagnosis and slowing down the progression of the disease. After all, there is no universal MS care pathway or structured approach that would allow many to lack the necessary information to accurately communicate about their disease with healthcare providers. Because this condition manifests itself so diversely, each patient needs his own unique care plan. In an ideal world, patient and doctor draw up this together,” explains Elke Saron of MS-Liga from Flanders. Recent research also shows that such active involvement in the care pathway leads to both better outcomes and greater patient satisfaction.
Hiding
MS is a chronic disease of the central nervous system that affects an estimated 12,000 people in our country. The disease causes inflammation in the central nervous system (brain and spinal cord), as a result of which brain areas are less able to communicate with each other and the brain no longer performs some functions properly. A number of complaints are visible, such as problems with walking, coordination, muscle weakness or speech changes, but much suffering remains invisible and MS often proceeds with erratic and unpredictable flare-ups. “Those invisible symptoms such as pain, severe fatigue, problems with short-term memory or concentration are sometimes difficult to accept by MS patients themselves or people close to them. People are more often silent about how much they suffer from this, while this is of course important information for their treatment. “
Lower threshold
The threshold for discussing these sensitive matters with your doctor must definitely be lowered, neurologist Stephanie Hostenbach (AZ Alma Eeklo) also agrees. “This certainly applies to a complex disease such as MS, so that important information about this is not missed and that plans such as a desire to have children can also be anticipated in the initial phase. After all, most patients receive their diagnosis between the ages of 20 and 40. In addition to the more visible complaints, MS can manifest itself through a series of invisible sufferings, which often have an even greater impact on daily functioning, but which are more difficult for people to talk about, such as sexual problems such as erectile dysfunction or loss of libido, urinary complaints such as urinary problems or cognitive difficulties. There is often still a taboo on that, while it occurs frequently.”
Fatigue is about the most common invisible symptom in MS. “It’s usually not too bad for me,” says Thalia Van Neste (48), who developed progressive MS years ago after the birth of her youngest daughter. “Nerve pains where you constantly have the feeling that your skin tingles as if it has been burned, bother me more. It is also unclear at the start of many complaints whether they are linked to MS, such as my bladder that no longer functions properly or my breathing. “
Thalia was diagnosed with MS after she had to deal with stabbing pain in her eye. “It got worse day by day until she got up and the vision through her left eye had completely disappeared. After a full day of extensive testing, the hardness fell. MS often comes to light through such an eye problem. Gradually, the visible and invisible complaints.
“It became increasingly difficult for my one leg to perform movements and my balance started to fail as a result. At times it seemed as if I was staggering drunk. After a few falls, a wheelchair became unavoidable. That went smoothly until my arm also lost strength and I had no choice but to switch to an electric one. That was a big step mentally, but it also gave me my freedom back.”
Limits
“I have learned to live with those limitations, although I have not fully accepted my illness. My family, friends and colleagues are used to it in the meantime. My employer adapted the workplace without any problems. They simply see me as Thalia and not as a person in need of help. a wheelchair. That makes it much easier for me to continue my life as normally as possible. During the Easter holidays I even managed to go skiing with assistance. That was such a positive milestone! I was always very sporty and that’s what I sometimes miss today, being able to exercise or walk so spontaneously.
As an MS patient, I find it very important to help determine my treatment. The gap between doctors and patients is often still large, as I have experienced myself. With the doctor who has been following me for years now, I can speak freely about all aspects of my illness: from an extra day of work, medication that does not work well or sensitive complaints such as bladder problems. As a patient, I am the specialist of my illness. If I don’t feel right about something, I’ll make it clear right away.”
Administrative labyrinth
In addition to (recognising) the often invisible symptoms and discussing them, more attention is also needed for the organization of help in dealing with your illness. Today, as a patient, you have to struggle through a true administrative labyrinth for all possible help: from a wheelchair to handles or incontinence material. “That consumes tons of energy and this frustrates me the most. For example, I have lost weight due to my illness and I therefore need a better-fitting wheelchair because the current one gives me back pain, but then I am told that I have at least 2 years to get a refund. must wait. Such additional obstacles should be resolved.”
The positive message that you can still lead a very good life with MS must also be better spread. “Yes, that diagnosis hits the bottom of your existence. But your life does not stop. It will be different, heavier, but there is still a lot you can do and where you can get positive energy from.”
More info: www.novartis.be/gotnerve
#Recognize #invisible #symptoms