The story that is repeated in the fight against rare diseases – 04/12/2020 – Luciano Melo

Luís has multiple sclerosis, a disease that attacks during outbreaks when there is inflammation in the brain, spinal cord, or optic nerves. An outbreak can cause one symptom or multiple combinations, such as: B. Difficulty moving, dizziness, tingling, blurring or double vision. Outbreaks are slowed down by remission. A biological process of recovery and disinflation.

In the midst of the tug-of-war between outbreaks and remissions, Luís lived without disabilities. Of course, he feared the next outbreak that might take something away from him permanently. However, his most pessimistic ideas did not predict what would come. One morning the young man opened his eyes wide when he moved the muscles of his face in an inimitable way. He was unconscious and nothing was rinsed with his eyelids open. So he was taken to the hospital.

In a medical emergency room, Luís was diagnosed with status epilepticus. It is one or more prolonged epileptic fits that occur continuously.

The evolution of coping with the status of epileptic evil follows a common script in human history. Hence, it is not surprising to find religious mentions in the oldest reference to a prolonged epileptic seizure in a Babylonian text that is a little over 2,700 years old. There are quotes about the “possessed demon” that he will die if he is “often possessed” and dies in the “moment of possession” when the victim “opens and closes his mouth for some time”.

Since the problem of continuous epileptic seizures is not a human priority, it has been neglected and rarely mentioned in ancient documents.

The term disease was first written in 1824 in a dissertation in Paris in allusions to what had happened to several patients in sanatoriums. The text indicated that sick people in the hospital used the adverb badly to describe the incessant seizures of other patients who ended up dying.

Thus, the condition has no longer been neglected and needs to be addressed. However, it is not uncommon for humans to come up with harmless or aggravating solutions to the situation. And so it was. Treatments proposed at the beginning of the last century suggested colonic irrigation because it was believed to be the condition caused by eating habits or constipation.

Fortunately, there have already been some critical septics. These methodological foundations for therapeutic developments that would be used in the future to save or save Luís. The initial protocols did not stop his convulsions, however.

Luís was given the strongest sedative and intubated. Electrodes were taped to his scalp so that the activity of the neurons could be read. Soaked in such a drug, the patient rested in the most abysmal form of the drug coma.

Antiepileptic drugs, from those bought in pharmacies, were also used in the pharmacological arsenal. Unsuccessful, all attempts to suspend the sedative were interrupted by further convulsions. The doctors replaced the drug combinations and the strong sedative was restored.

Two months passed with no progress whatsoever. While the medical team was explaining about the treatments, one of Luí’s visits routinely tried to cure him with the laying on of hands. The doctors and the visit were tied for failure. We humans cling to false secrets sometimes.

It is extremely rare for multiple sclerosis to cause epileptic fits. Persistent and endless seizures like those Luís were exposed to are even rarer. However, multiple sclerosis was responsible for the boy’s condition according to extensive laboratory tests.

The anti-inflammatory treatment has been modified and intensified. At the same time, doctors defied the instructions for drugs and medical books and prescribed a certain anticonvulsant in a very high dose. The ignored texts stated that this drug should be gradually increased by the patient, initially in a small dose over a period of weeks. The critical situation favored the heterodoxy.

For many problems the solution has not yet been described. It worked, Luís recovered.


1 – Neligan A, Shorvon S The history of status epilepticus and its treatment. Epilepsy, 50 (Suppl. 3): 56-68, 2009 doi: 10.1111 / j.1528-1167.2009.02040.x

2- Calabrese M, Castellaro M Epilepsy in Multiple Sclerosis: The Role of Temporal Lobe Damage. Multiple Sclerosis Journal 2017, Vol. 23 (3) 473-482 DOI: 10.1177 / 1352458516651502.

3 – Spatt J., Goldenberg G., Mamoli B. Partial epilepsy continues in multiple sclerosis. Lancet 1995; 345: 658-9.

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