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Anti-IgLON5 disease

Posted by rgbaker @rgbaker, Jun 21, 2022

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jun 21, 2022

@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
2 replies
rgbaker | @rgbaker | Jun 21, 2022
In reply to @hopeful33250 "@rgbaker Your interest in this disorder is understandable as it is rare. The NIH has an..." + (show)
@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
rgbaker | @rgbaker | Jun 21, 2022
In reply to @hopeful33250 "@rgbaker Your interest in this disorder is understandable as it is rare. The NIH has an..." + (show)
@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
loriryland | @loriryland | Jun 9, 2023

My 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?

REPLY
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