Anti-IgLON5 disease

Posted by rgbaker @rgbaker, Jun 21 5:40pm

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?

REPLY
@hopeful33250

@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?

Jump to this post

Hi
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.

REPLY
@hopeful33250

@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?

Jump to this post

Hi again
I’ve read that article and most everything else I can find on the internet.

REPLY
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