Just Diagnosed with Unilateral Vestibular Hypofunction 31%
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Hello,
I have a strange case. Extremely loooooong story short (or shorter anyway)..... I do not remember having a crisis or illness to cause my loss. I did have vertigo about a year or 2 ago, then balance issues after that. But I was on a high dose of an SSRI and I think that was masking some of the symptoms. Then I had a horrible drug reaction to a steroid and I guess that either decompensated me or caused a toxic reaction. I have been extremely ill since. I also got off the SSRI, which caused the vestibular disorder to feel worse, I guess? Vision not right, eyes, not focusing, balance, nausea, warped vision, sound sensitivity etc. Have had 2 brain scans and a million tests. have seen 10 neuros. One ENT yelled at me that I had MS, because we don't know when this started. Three others think vestibular neuritis at some point.
Anyway, my question is - has anyone else had it show up somewhat unexplained?
Also, any tips for recovery? Not keen on getting back on an SSRI. I was getting tremor and other bad side effects. 😦 I am really sensitive to prescription drugs. I also have Ehler's Danlos syndrome, POTS, and now this weird vestibular thing. 🤦
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margaret22116 SOcean
Posted
hi well it does sound a bit similar to some symptoms I have had in the past related to an auto immune disorder. My symptoms were mostly neuro in nature but it is not a neurological disorder. I see you have ai disorders already going on there. Who do you see for those? I was diagnosed with Behcets maybe 17 years ago. I doubt you have that because you would have ulceration which you don't mention but other disorders like Lupus can cause similar kind of neuro type symptoms which often lead people and even doctors to suspect things like ms or even parkinsons. So I wonder who you see already for the Ehler's Danlos? And how it was diagnosed.
I am happily in remission currently but I see a specialist in this area. Neurologists were not helpful to me at all. But that is understandable really because my disorder is not a neurological one. Nothing in brain scans explained what was happening to me. Only one neurologist who has a special interest in inflammatory disorders and works in that field was able to understand the root of the problem. But he is unusual and works across different disciplines.
I was initially diagnosed by an immunologist in London. I currently see a specialist in Cambridge.
I too have sensitivity to many drugs. It is very common with fellow sufferers. I did find something which worked for me though. I wonder what your blood work shows? Particularly your inflammatory markers. any idea? ana esrc and crp...anything remarkable there?