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Anti-IgLON5 disease
Has anyone been diagnosed with this disorder?
I’ve been jumping through medical hoops for several years now and have a group of diagnoses, bilateral Menieres, laryngeal neuropathy, fibromyalgia, fine fibre neuropathy, with progression of all, that are now being considered as IGLON5 disorder. I understand it’s quite rare so info is limited. I already have memory loss which is associated with the disorder and its progression is my greatest fear, globus causing food bolus, central sleep apnoea managed with CPAP, and more.
Im about to go through testing including nerve conduction studies, which I’ve had previously, blood tests, lumbar puncture etc then depending on results, treatment options.
I currently see a neurologist, immunologist, ENT, Resp physician and of course GP
Any info/advice greatly appreciated.
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@rgbaker
Your interest in this disorder is understandable as it is rare. The NIH has an article about it, here is the link, https://pubmed.ncbi.nlm.nih.gov/28381508/.
It sounds like you have a good medical team in place. What is the most difficult symptom you are experiencing now?
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1 ReactionHi
The menieres symptoms, and memory loss and fatigue are the most distressing at the moment. Food bolus is occasional and I can manage it for now.
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1 ReactionHi again
I’ve read that article and most everything else I can find on the internet.
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1 ReactionMy brother has just been diagnosed with IGLON5. Although he has not had the usual symptoms he does have the antibodies in his body and has lost the vision in one eye. His care team is doing IVIG therapy every 3 weeks to see if he can keep this disease at bay. The doctors are telling him it is a stretch to think that his vision was impacted from these antibodies. Please let me know if you learn anything. I am trying to help him. Anything new that is helpful would be appreciated such as diet recommendations? Does the KETO diet help etc?
I know this post is old, but I have researched enough about it, and similiar conditions, to be helpful to someone; in this disease there is almost always profound insomnia, as well as REM sleep without atonia, and NREM sleep behaviors/ sleep walking, sleep eating, as well as sleep apnea (both obstrutive and central), in addition to involuntary movements that are described as chorea and myoclonus, though the age onset is wide, its been noted mostly people around 50 years old. One of the differential is Morvan's syndrome, and a few other things when that sleep disorder triad is present. There are also cognitive problems along with hallucinations, including a report of a patient hallucinating musical melody fragments. Despite the diseases profound effect on sleep, most scientific textbook on sleep make no mention of IgLON5 receptors and their role in sleep. Further there is noted unlike other forms of autoimmune encephalitis it causes a build up of Tau accumulation. [My hypothesis (that's all it is) is that this build up occurs because of the nature of the sleep disorders, not getting deep sleep to clear it out.]
(Lol cows, I have had all of these symptoms and it just gets explained away as schizoaffective disorder, so no spinal tap for me. "Too dangerous", why don't they understand how dangerous 240 hours without sleep is?)