After reading posts for several years, I think there’s a huge national difference how people with Ataxiia are treated. British Ataxians seem so busy with annual checkups and therapies while Yanks get medical care only when their condition is dire. GP’s don’t understand Ataxia and Neurology states that your condition is progressive but automatic recall is not necessary. Is this common or am I too passive?.
1 Like
I completely understand what you are saying. As a military veteran, I’ve been diagnosed through their health system and further released from their Neurology department because they couldn’t do anything for me.
it might be worse than you say. I’ve had ataxia for more than 20 years and simply refuse to see a neurologist that knows little about the disease which includes all in an entire city where I lived. You’re right that GP’s are not much better either and often are gatekeepers to see other specialists who can treat symptoms if they knew to look for them. I had apnea and had no clue about this but a young neurology student sent me to the sleep clinic. The supervising neurologist was too important to see me (lucky me). Going to see a neurologist that doesn’t keep up for a disease that has no treatment makes no sense. So I fly to UCLA to see a top specialist/researcher at their ataxia clinic. Still no treatment but getting genetic testing regularly that may lead to treatment. Most can’t afford to do this. But they do take Medicare & my family helps with air-miles. However there are other complications that can be treated and likely missed without being seen by a competent neurologist at least annually—sleep apnea, nstagmus & other vision problem, physical therapy for walking problems & others.
I live in the UK
My ‘ataxia’ symptoms were ignored for many years, because initial symptoms resulted in me being diagnosed with something else
Quite often symptoms can ‘overlap’ conditions and make exact diagnosis difficult until something changes.
The onset of falls changed things for me…
Since 2011 I’ve been seen regularly for reviews, at least every 18mths. This is likely due to my specific history of symptoms and the fact no link can be found re an exact link.
Sometimes…ataxia can be Acquired, due to trauma-illness-meds and other reasons.
Sometimes…it can simply be known as Late-Onset Cerebellar Ataxia
But…we all experience very similar symptoms.
I’m still considered Idiopathic…the exact cause could be a Recessive type, in which case it would be genetic. I’m waiting to have Whole Genome Sequencing, this is because when I donated DNA for a Study, the only link that came up was a 70% link with SYNE1 …so my Neurologist dismissed it.
Beryl , several decades ago, as a student at Berkeley my professor was lecturing on IQ scores and capitalized IQ for British thinking, that IQ was real and there were tests to measure it. He used lower case, iq to represent American thinking. Americans thought test scores measured academic performance estimates only and IQ didn’t really exist. I think British and U.S.views on Ataxia are different. Your doctors watch you and attempt to help. Our Neurologists don’t use the word Ataxia, don’t explain it or watch it progress. It’s more like 'why are you here?" There are exceptions, but who has 10 years to search?