Specific phobia of amyotrophic lateral sclerosis (ALS phobia): 233 observations over 18 years (2006–2024)

G.N. Levitsky, A.B. Berdalin, V.M. Gilod, A.S. Levitsky, E.A. Kovrazhkina, E.L. Shovkoplyas, O.V. Gilvanova, E.S. Makashova, A.V. Polyakov, V.V. Shestachenko, V.A. Savko, E.A. Ermolyeva, E.V. Galtsev, G.A. Olivenbaum, O.V. Vidergold, O.S. Levin, E.B. Laukart

1) Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Moscow, Russia; 2) Alekseev Psychiatric Clinical Hospital No. 1, Moscow, Russia; 3) Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital, Moscow, Russia; 4) Private Psychiatrist, Narcologist and Psychotherapist, Moscow, Russia; 5) Federal Center for Brain and Neurotechnology of the Federal Medical and Biological Agency of Russia, Moscow, Russia; 6) Center for Neuromuscular Pathology, A.S. Loginov Moscow Clinical Research Center, Moscow, Russia; 7) Research Centre for Medical Genetics, Moscow, Russia; 8) Department of Neurology and Reflexology, Russian Medical Academy of Continuos Professional Education, Moscow, Russia; 9) Central Clinical Hospital of the Administrative Directorate of the President of the Russian Federation, Moscow, Russia

Background. There have been no new publications on the alsphobia since 2012, but awareness of amyotrophic lateral sclerosis among people with anxiety disorders has increased, as has the incidence of phobic disorders. Methods. 233 patients with alsphobia were examined in neurological and psychiatric clinics with an assessment of the dynamics at different times using the Hamilton Depression Rating Scale. Neurological and endocrinological diagnoses as causes of «benign fasciculation syndrome» were established by excluding various causes using the methods of collecting anamnesis and follow-up, magnetic resonance imaging, needle and stimulation myography, analysis of creatine phosphokinase levels, genetic analysis for DAT1 gene mutations, and others. Results. In total, there were 49 patients (22.4%) with a history of other phobias, 35 (16.0%) with panic attacks, 14 (6.9%) with a patient with ALS in the family, 11 (5.2%) doctors, and 11 (5.2%) iatrogenic cases. Thirty-nine (16.7%) patients were diagnosed with neurological diseases, and ten (4.3%) with endocrinological diseases. In total, there were 159 (68.2%) patients who received a psychiatric consultation, and 74 (32.3%) patients who did not. A total of 212 patients were assessed using the HAM-D scale before treatment and 151 after treatment. The sensitivity and specificity of such symptoms of alsphobia as video recording of twitching, twitching in the feet, interpretive delusions and agitation were 55–79% (p<0.001–0.0005). All these symptoms significantly correlated with each other with correlation coefficients from 0.2 to 0.6. The correlation between the duration and the HAM-D score was not significant (p=0.069). According to the ANOVA, the severity of phobia with assessment using Hamilton score, did not differ significantly (p=0.281). The severity of phobia according Hamilton score did not differ significantly depending on the presence of ALS in the family (p=0.594), iatrogenia (p=0.683), or health care workers (p=0.917). In situational anxiety disorders, the percentage of recovered patients was significantly higher than in endogenous diseases (χ2=23.3, p<0.001). The time dynamics in terms of recovery was significant (p<0.0005), but the differences between neurological, mental, and endocrine disorders, both in general (p=0.567) and in dynamics (p=0.436), were insignificant. Mutations in the DAT1 gene were detected in 15 of 20 examined patients. Prescription of therapy with an antidepressant and/or an atypical neuroleptic, thymoleptic did not significantly change the probability of recovery (p=0.172). According to the results of follow-up, one patient developed ALS, and one patient developed spinal amyotrophy (clinical examples are presented). Conclusion. The judgement of a psychiatrist whether a patient has situation-mediated or endogenous anxiety disorder plays a key role. The prognosis for recovery is more favorable in patients with situational disorders. High sensitivity, specificity, and correlation of specific symptoms of alsphobia are shown. Management of patients with «benign fasciculation syndrome» within the framework of alsphobia should be carried out using a multidisciplinary approach (neurologist, functional diagnostics physician, psychiatrist, endocrinologist).

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About the Authors

Gleb N. Levitsky, Cand. Sci. (Med.), Neurologist, Functional Diagnostics Doctor, General Director, Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Director of the Nina Levitsksya (Russian) Charity ALS foundation, International Emissary for ALS Patients’ Rights, Moscow, Russia; alsrus@gmail.com (corresponding author)
Alexander B. Berdalin, Senior Research Fellow, Alekseev Psychiatric Clinical Hospital No. 1, Moscow, Russia, Moscow
Vadim M. Gilod, Cand. Sci. (Med.), Psychiatrist, Head of the Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital, Moscow, Russia
Elena A. Kovrazhkina, Cand. Sci. (Med.), Neurologist, Functional Diagnostics Specialist, Employee of the Federal Center for Brain and Neurotechnology of the Federal Medical and Biological Agency of Russia, Moscow, Russia
Andrey S. Levitsky, Private psychiatrist, Narcologist and Psychotherapist, Moscow, Russia
Elena L. Shovkoplyas, Psychotherapist, Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Moscow, Russia
Olga V. Gilvanova, Neurologist, Functional Diagnostics Specialist, Head of the Center for Neuromuscular Pathology, A.S. Loginov Moscow Clinical Research Center, Moscow, Russia
Elizaveta S. Makashova, Neurologist and Functional Diagnostics Specialist of the Center for Neuromuscular Pathology, A.S. Loginov Moscow Clinical Research Center, Moscow, Russia
Varvara A. Savko, Psychiatrist, Crisis Psychiatric Department, Yeramishantsev City Clinical Hospital, Moscow, Russia
Elena A. Ermolyeva, Psychiatrist, Crisis Psychiatric Department, Yeramishantsev City Clinical Hospital, Moscow, Russia
Evgeny V. Galtsev, Psychiatrist, Crisis Psychiatric Department, Yeramishantsev City Clinical Hospital, Moscow, Russia
Grigory A. Olivenbaum, Assistant Director, Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Moscow, Russia
Oleg V. Vidergoldt, Assistant Director, Gleb Levitsky Clinic, Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Moscow, Russia
Victoria V. Shestachenko, Deputy Director for Development, Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis, Moscow, Russia
Alexander V. Polyakov, Dr. Sci. (Biol.), Professor, Corresponding Member of the Russian Academy of Sciences, Head of the Genetic Laboratory, Research Centre for Medical Genetics, Moscow, Russia
Oleg S. Levin, Dr. Sci. (Med.), Professor, Head of the Department of Neurology and Reflexology, Russian Medical Academy of Continuous Professional Education, Moscow, Russia
Elena B. Laukart, Cand. Sci. (Med.), Neurologist, Head of the Neurological Department, Central Clinical Hospital of the Administrative Directorate of the President of the Russian Federation, Moscow, Russia

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