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As more patients have been identified, the list of unusual symptoms has grown, Dr. Marrero said. Many experience muscle aches, pain in their limbs, and spasms – symptoms that do not appear to come from the limbs themselves, but from the brain structures that control pain. The majority eventually develop severe insomnia – and some do not sleep for days, even with sleep medication, he said. A few sleep too much, and it is not easy to wake them.
Patients have problems with memory and aphasia, or trouble finding words to express themselves. Some develop stuttering and more than one patient has developed echolalia, where they repeatedly echo what someone else says and are unable to stop. They sometimes become disoriented in familiar places.
All have visual disturbances – most commonly blurry vision – but also problems with depth perception, which causes dizziness. A majority have visual hallucinations, which can be “terrifying or frightening,” he said. Other types of hallucinations have emerged as well – phantom noises or voices, and tactile hallucinations, such as the sensation of crawling insects.
Involuntary muscle jerks persist even in the late stages of the disease when patients are unconscious. Minor stimuli, such as lights or sound, can provoke something similar to a whole-body startle response.
Patients also develop tremors, have trouble walking without falling, and they lose weight, mainly owing to muscle atrophy.
Many have dry hair and skin, leading them scratch so much that they sometimes cause wounds and develop infection. Some also experience hyper-salivation, or drooling.
In later stages of illness, patients have akinetic mutism, where they no longer have the ability to speak or move.
“It’s very sad to see for the families, and obviously for us, as physicians,” Dr. Marrero said.
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