Some of you may find this interesting. Found in the current issue of Brain and Life magazine: Broadcast Journalist Deborah Roberts Shares How She Manages Vertigo
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I have a history of Vestibular issuesā¦I can relate to this article. Over the yearsā¦because Iām treated via the NHS in the UKā¦this specific problem has mostly been overlooked as being part and parcel of Cerebellar Ataxia.
At one pointā¦I was referred to an Ear, Nose and Throat Specialistā¦but he only did a basic hearing test.
Recentlyā¦I had a letter confirming my results of Whole Genome Sequencing didnāt show a link to any genetic ataxia. It will be August 2025 before I have my next appointment with a Neurologistā¦and find out whether I will have further reviewsā¦or will be āsigned offā.
In the meantimeā¦Vestibular issues and mobility problems are progressing rapidly.
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Thatās why I have always said that very few doctors really know about Ataxia and its effects, They know the symptom ataxia but not much after that. When your eyes become affected then your balance also becomes affected. Your eyes are the windows to the world is really not understood by someone who doesnāt have an eye problem.
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In generalā¦GPs/familydoctors-most hospital nurses/doctorsā¦ā¦do not know what Cerebellar Ataxia isā¦they just havenāt come across it. This will be the same for many Rare Diseases. With over 7500ā¦they canāt be expected to know everything butā¦itās reasonable to expect a medical professional to ālook upā the diagnosis of a patient in their careā¦if they arenāt familiar with it.
Thankfully we have access to Specialist Neurologistsā¦and the internet.