Time is money in the diagnosis of most diseases because the sooner treatment begins, the better the prognosis. It was not in multiple sclerosis, a disorder that causes demyelination of nerve fibers. Neurologists waited for the patient to have his second flare to confirm the diagnosis because there was nothing to offer them. That’s history now. Most of the drugs used are most effective in the early stages of the disease.
The treatment of multiple sclerosis is undergoing a revolution that is enthusiastically attended by neurologists who began treating it three decades ago. Celia Oreja-Guevara, coordinator of the sclerosis group at the European Academy of Neurology and head of section at the San Carlos Clinical Hospital, is one of them. “In 1995 we had only one treatment, now 16. The situation has completely changed.”
There are better treatments, but we are still late in the diagnosis?
There are still cases that take time to reach the neurologist. The main problem is that multiple sclerosis manifests itself in young patients, with an average age of 30 years. If a young person wakes up one day and notices blurred or double vision, they will most likely go to an emergency room where they will be quickly diagnosed or referred to a specialist. The problem is when the first symptoms are sensitive: for example, an arm or foot that falls asleep or, sometimes, the face… If that sensation does not last long and disappears, it is usually attributed to another cause. Especially when the patient is a woman. It’s funny, but it doesn’t happen to men, it’s a prejudice. A young woman, by definition, seems like she can’t have anything. If there is no neurologist on call in the emergency room of that center, that woman usually goes home with a diagnosis of depression or anxiety. In a man with paresthesia, it is always thought that there may be something physical. They are taken more seriously.
How can we end these prejudices?
We have been making guides and advertising with patient associations for years, but the message seems to not be getting through. As also happens with heart attacks in women.
What is at stake with the delay in diagnosis?
We say that in stroke time is the brain and in multiple sclerosis the same thing happens. The symptoms reflect that the brain is being damaged, that there is an inflamed and demyelinated area. The longer it takes to treat, the more injuries and more brain damage there will be.
Has the fatalism surrounding the disease been abandoned?
It is true that it is a disease that still arouses a lot of fear. Therefore, when we give the diagnosis we do it very carefully. For the patient there is only one image associated with this disease and it is that of the wheelchair. The first thing we do is erase that preconceived image because there are fewer and fewer cases in that situation. We prefer to associate it with a chronic disease like diabetes, which cannot be cured but with which we can live. However, I have patients who have been with it for ten years and have preferred to hide it in their work. One of them told me that if he had said it, he would never have been promoted. There is a lot of ignorance and multiple sclerosis is assumed to be a disability.
«The first symptoms of multiple sclerosis in a man are taken more seriously. With women there are more prejudices and it is confused with anxiety.”
Now the reality of patients is different.
In 1995 we had a single treatment, now we have 16. This allows us to give each patient a more personalized treatment, the one that least interferes with their work life, their lifestyle… and if one fails, we know that there is a replacement. Nobody anymore considers that a sick person ends up in a wheelchair. It only happens in 10 percent, before it was 90 percent, everyone arrived.
New treatments were presented at the last European Congress. Do they represent real change?
A new family of drugs will arrive soon that cover a very important unmet need. Multiple sclerosis is an inflammatory and degenerative disease. At first there is a lot of inflammation and less degeneration, but that reverses over the years. It is a silent progression that you see in patients who do not have new outbreaks or lesions but feel unwell: they get more tired, have more bladder problems, can no longer concentrate… Until now, treatments attacked inflammation and reduced the number of flares and lesions in the brain. But we had nothing to treat the degeneration. At the last international congress, the first treatment that acts directly on this silent degeneration was presented. In patients who walked very poorly and no longer had outbreaks or inflammation, progression and, therefore, disability have been reduced. It is the first time it has been achieved and will allow us to provide combined treatments from the beginning, both for inflammation and degeneration.
Progression is stopped, but not repaired.
That is. In order to repair what has been lost we would need remyelinating drugs. There is research underway, with drugs in phase II, but it is not that advanced.
Are there more cases of multiple sclerosis or is it simply more diagnosed?
Now it is diagnosed more and better, although we do not have precise data. The best European record is Danish. It began in the 50s and they have seen that the incidence and prevalence has increased, although only in women. There is a lot of thinking about why. The hormonal factor is the same now as it was 30 years ago, but women’s lifestyles have changed in recent years: they go out less, eat worse, take less vitamin D and exercise less. Another differentiating factor is the use of contraceptives that were hardly used before.
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