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.