Are there any narcoleptic MSers out there?

#MSResearch Do you suffer from excessive daytime sleepiness? You may be a narcoleptic #MSBlog

“Have you heard about narcolepsy? Narcolepsy is a rare condition in which people fall asleep inappropriately, for example in business meetings. We think narcolepsy is autoimmune disease due to involvement of a part of the brain that makes a protein called hypocretin. A reduction of spinal fluid hypocretin levels is used to make the diagnosis of narcolepsy. Other features of narcolepsy include rapid onset of a phase of sleep called REM,  or rapid eye movement, sleep, cataplexy which is sudden loss of muscle tone with emotion and sleep paralysis; waking-up with the inability to move your arms and legs. Reversible narcolepsy occurs rarely as part of MS and when it does occur it is associated with MS lesions in a part of the brain that make hypocretin, i.e.  the hypothalamus. I have personally seen one case; I could never confirm the diagnosis because the person’s symptoms resolved before they could be admitted for their sleep study and lumbar puncture. The MRI however, did show hypothalamic lesions. What is interesting is that modafinil, a drug we sometimes prescribe for MS-related fatigue, is used to treat the hypersomnolence of excessive sleepiness that occurs with narcolepsy.”

Kanbayashi et al. The pathophysiologic basis of secondary narcolepsy and hypersomnia. Curr Neurol Neurosci Rep. 2011 Apr;11(2):235-41.

The symptoms of narcolepsy can occur during the course of other neurologic conditions (ie, symptomatic narcolepsy). Inherited disorders, tumors, and head trauma were the three most frequent causes for symptomatic narcolepsy. Other causes include MS, vascular disorders, and encephalitis. Cerebrospinal fluid hypocretin-1 measures were carried out in some recent cases with symptomatic narcolepsy, and moderate decreases in hypocretin levels were seen in a large majority of these cases. Excessive daytime sleepiness (EDS) in these symptomatic cases was sometimes reversible with an improvement of the causative neurologic disorder and with an improvement of the hypocretin (orexin) status. Recently, we found that several symptomatic narcoleptic cases with MS show unique bilateral symmetric hypothalamic lesions associated with significant hypocretin ligand deficiency. In addition, these patients often share the clinical characteristics of neuromyelitis optica (NMO) and the detection of NMO-IgG (or anti-aquaporin-4 [AQP4] antibodies), suggesting a new clinical entity. Further studies of the involvement of the hypocretin system in symptomatic narcolepsy and EDS are helpful to understand the pathophysiologic mechanisms for occurrence of EDS and cataplexy.

“In keeping with the sleep theme would it be possible to complete the following screening questionnaire? We are trying to ascertain how common sleep abnormalities are in MS. Thank you.”

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


  • Even if you have not got MS, surely many of the answers would be similar for people would don't sleep

  • I have MS and Sleep Apnea that I treat with a CPAP machine. I get at least 6 hours sleep each night with the machine, and have low AHI (generally between 1 and 5), yet my daytime sleepiness is practically debilitating. I'm on Modafinil and while I'm sure it helps to some degree, my fatigue is extraordinary.

  • I was diagnosed with Narcolepsy and Cataplexy in 1991. I know my grandfather had it too although never diagnosed. I was diagnosed with prolactinoma in 2001. I had a heart attack in 2014 and they don't know why they think it was a blood clot on lower branches that cleared, I am not unfit or overweight. I am female 49 years. After heart attack I my legs started buckling. In 2016 I was diagnosed with PPMS. I was told these conditions are not connected. Absolute and utter rubbish they are.

By Prof G



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