Architect Lara Arantes, 25, had the first symptoms of multiple sclerosis in 2017 and was a little unusual: “I went to apply deodorant and didn’t feel my armpit on the right side. I thought it was weird, but I didn’t. be.”, remember.
Years passed, and when she began dating truck driver Marlon, who is now her husband, she had another manifestation of the disease. Since he was living in Joinville (SC) and Lara in Timoteo (MG), she had to travel long distances to visit him. “I was traveling and lost sensitivity on the right side, I didn’t feel what was hot or cold. I took the cold bottle in my hand and I didn’t feel anything. She was desperate,” he says.
Frightened, he ran to the hospital, where they took several tests, but found nothing – they even suspected that he had a stroke. “They said I would be accepted because it wasn’t possible to have the MRI on Saturday, so I had to wait until Monday, but I thought it was best to go back to my city.”
When he arrived at Timoteo, the doctor asked for an examination, but Lara left him aside, and by that time, more than six months had passed. She graduated in architecture, and soon after, she went on to present her first project to clients.
I was feeling sick, and I had a lot of headaches. My eyes started to “lock” at the meeting, and I couldn’t look away. I asked my partner to continue the show and left the room. When I got home, I had labyrinthitis and started seeing everything multiply. Lara Arantes, 25
So, he searched for an ophthalmologist in his city. “When I closed one of my eyes, I saw normally, but when I opened both eyes together, I saw everything double,” he recalls. Because of the symptoms, the doctor said she should go to a neurologist. That’s what Lara finally did – that’s early 2020.
When she did an MRI, the doctor identified multiple sclerosis, a progressive inflammatory and autoimmune disease that affects the brain and spinal cord. There were more than 15 neurological lesions.
That day, the architect was taken to the hospital to take corticosteroids – which are part of treatment during the outbreak. After that, she went to find a doctor for treatment: “In Timóteo, we don’t have a sclerosis specialist, so I was advised to look for a doctor in Belo Horizonte,” she said. “There I found a doctor who takes care of me to this day.”
During the consultation, Lara discovered that she had an active disease, that is, when there were many lesions detected by examination, relapse and remission (or relapse and remission). This means that the disease goes through periods of outbreaks (symptoms onset) and subsequently improves, either with treatment or spontaneously.
I paid 33,000 BRL for the treatment
According to doctors, the drugs used to treat the development of the disease are very expensive. Therefore, the SUS (Unified Health System) offers many options to patients, from oral medications to intravenous medications. The problem is that for some people, alternatives are not enough to control the progression of MS.
Speaking to the doctor, Lara explained that sclerosis has no cure, but it will be possible to treat the disease with medication or for free, through insurance or privately (using their own money).
“When patients arrive, whether through SUS or not, I offer a panorama of drugs, which are the best free options, both through the public and private network,” says Raquel Vasau Araujo, neurologist, and medical leader for scientific innovation at AME (Multiple Friends With Sclerosis) and CDD (Records of the Day).
But in the case of Lara, his patient, one option was a high-cost drug not provided by SUS, oral cladribine.
In the first year, I borrowed money from my grandfather and paid 33,000 reais – it was supposed to cost 140,000 reais. In the second year, I only got medicine by going to court. Lara Arantes, 25
This drug works as follows: the patient takes 5 tablets in the first month, does the same in the second month and repeats the regimen after 1 year – and according to doctors, it is 3-4 years without using it again. “It’s an oral medication that a patient uses for a short period of time, different from medications available through SUS, which are used daily,” Araujo explains.
The problem is that the drug is not within reach of most people – and it is one that can be compared Cladribine Oral, among the “latest”, is natalizumab, now Available on the public network.
Lara started the treatment in December 2020 and repeated it in 2021. Since then, life has been much better. “I haven’t had any outbreaks or active lesions. The lesions that I had previously had shrunk in size. I didn’t have any supplement either. It was almost a miracle,” he says. The architect married her boyfriend at the time, a truck driver. Now, they can travel more easily around Brazil.
The disease is more common in women
Multiple sclerosis, also known by its abbreviation MS, is the most common disease of the central nervous system (CNS) worldwide. “It’s a disease immune mediatedthat is, when the same organism attacks, resulting in inflammation in the brain or spinal cord — it can be in both at the same time, which indicates greater severity,” explains neurologist Jefferson bakerProfessor of the PUC-RS (Pontifical Catholic University of Rio Grande do Sul) and President BCTRIMS (Brazilian Committee for Treatment and Research in Multiple Sclerosis).
Also, the condition is more common in young women. “The average age at which symptoms of the disease begin is close to 30 years. It is very common for them to start between 20 and 40 years,” the doctor says.
Signs of disease can vary depending on the site affected. “The most common is a decrease in strength on an entire side of the body or in the extremities, like the legs, for example. There is also a change in sensitivity, tingling, or numbness in any part of the body,” Becker says. .
“The third most common is neuritis, which causes visual ‘blurry’, especially in the most central areas, causing pain when moving the eyes.” According to the neurologist, there are other signs, such as altered balance, coordination and double vision (See the full list below).
It also reinforces the importance of finding a neurologist to diagnose the disease as quickly as possible. “People feel numbness on an entire side of the body, have blurred vision, and feel weak, but they think it’s stress or because they’ve fallen asleep on their arm, and they don’t seek help. But you need to see a doctor,” he says. “The earlier the diagnosis is made, within two years of the first symptoms appearing, the better the prognosis for the patient,” says the professor.
The main symptoms of multiple sclerosis
- Vision loss (may be in only one eye), double vision
- Dizziness or loss of balance
- change in speech (dyastria)
- Difficulty swallowing (dysphagia).
- loss of sensitivity
- tingling (paresthesia)
- loss of touch (dysesthesia)
- Urinary urgency
- memory loss
- Difficulty concentrating
- loss of executive function
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