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

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Abstract

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

Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis

Author for correspondence.
Email: alsrus@gmail.com

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

Russian Federation, Moscow

Alexander B. Berdalin

Alekseev Psychiatric Clinical Hospital No. 1

Email: alsrus@gmail.com

Senior Research Fellow

Russian Federation, Moscow

Vadim M. Gilod

Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital

Email: alsrus@gmail.com

Cand. Sci. (Med.), Psychiatrist, Head of the Crisis-Psychiatric Department

Russian Federation, Moscow

Andrey S. Levitsky

Private Psychiatrist, Narcologist and Psychotherapist

Email: alsrus@gmail.com

Private psychiatrist, Narcologist and Psychotherapist

Russian Federation, Moscow

Elena A. Kovrazhkina

Federal Center for Brain and Neurotechnology of the Federal Medical and Biological Agency of Russia

Email: alsrus@gmail.com

Cand. Sci. (Med.), Neurologist, Functional Diagnostics Specialist, Employee of the Federal Center

Russian Federation, Moscow

Elena L. Shovkoplyas

Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis

Email: alsrus@gmail.com

Psychotherapist

Russian Federation, Moscow

Olga V. Gilvanova

Center for Neuromuscular Pathology, A.S. Loginov Moscow Clinical Research Center

Email: alsrus@gmail.com

Neurologist, Functional Diagnostics Specialist, Head of the Center for Neuromuscular Pathology

Russian Federation, Moscow

Elizaveta S. Makashova

Center for Neuromuscular Pathology, A.S. Loginov Moscow Clinical Research Center

Email: alsrus@gmail.com

Neurologist and Functional Diagnostics Specialist of the Center for Neuromuscular Pathology

Russian Federation, Moscow

Alexander V. Polyakov

Research Centre for Medical Genetics

Email: alsrus@gmail.com

Dr. Sci. (Biol.), Professor, Corresponding Member of the Russian Academy of Sciences, Head of the Genetic Laboratory, Research Centre

Russian Federation, Moscow

Victoria V. Shestachenko

Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis

Email: alsrus@gmail.com

Deputy Director for Development

Russian Federation, Moscow

Varvara A. Savko

Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital

Email: alsrus@gmail.com

Psychiatrist, Crisis Psychiatric Department

Russian Federation, Moscow

Elena A. Ermolyeva

Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital

Email: alsrus@gmail.com

Psychiatrist, Crisis Psychiatric Department

Russian Federation, Moscow

Evgeny V. Galtsev

Crisis-Psychiatric Department, Yeramishantsev City Clinical Hospital

Email: alsrus@gmail.com

Psychiatrist, Crisis Psychiatric Department

Russian Federation, Moscow

Grigory A. Olivenbaum

Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis

Email: alsrus@gmail.com

Assistant Director, Gleb Levitsky Clinic

Russian Federation, Moscow

Оleg V. Vidergoldt

Gleb Levitsky Clinic with a Private Center for Amyotrophic Lateral Sclerosis

Email: alsrus@gmail.com

Assistant Director, Gleb Levitsky Clinic

Russian Federation, Moscow

Oleg S. Levin

Russian Medical Academy of Continuos Professional Education

Email: alsrus@gmail.com

Dr. Sci. (Med.), Professor, Head of the Department of Neurology and Reflexology

Russian Federation, Moscow

Elena B. Laukart

Central Clinical Hospital of the Administrative Directorate of the President of the Russian Federation

Email: alsrus@gmail.com

Cand. Sci. (Med.), Neurologist, Head of the Neurological Department

Russian Federation, Moscow

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Supplementary files

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2. Fig. 1. Sensitivity (left) and specificity (right) of the symptom of twitching in the feet in ALS phobia

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3. Fig. 2. Sensitivity (left) and specificity (right) of the video recording symptom of twitching in ALS phobia

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4. Fig. 3. Sensitivity (left) and specificity (right) of interpretive delusions in ALS phobia

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5. Fig. 4. Sensitivity (left) and specificity (right) of arousal in phobia

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6. Fig. 5. No correlation between duration and Hamilton Depression Scale score in ALS phobia

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7. Fig. 6. Dynamics of decrease in score on the Hamilton Depression Scale in patients with ALS phobia during treatment

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8. Fig. 7. HAM-D score as a function of recovery status in ALS phobia

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9. Fig. 8. Video recording of the patient's physiological body bendings, taken for amyotrophy, within the framework of interpretive delirium

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