I’m waiting for genetic results for Episodic Ataxia. I had my first bad episode in June this year. Up till now I’ve had good and bad days but today I can hardly walk. I haven’t yet bought any mobility aids so I’m bed bound for the day as much as I can be around two children. Thankfully one is in preschool and my husband works from home. All I’ve had is a ten minute phone conversation with a neurologist since June and a GP fobbing me off with anti anxiety meds. As this episode is particularly bad, do I need to do anything? I don’t know whether I should go to A&E where there is an on call neurologist or just ride it out.
I’m Merl from the Modsupport Team and although I don’t have ataxia, I have some ataxic symptoms due to a traumatic brain injury from a motor vehicle accident and a brain tumour.
If you are concerned, which you obviously are, I’d recommend getting it checked out. Look, they may say “ohh well we can’t find anything…” which is really common with episodic symptoms I’m sorry to say. In my opinion some GP’s are good for ‘general’ medicine. The normal everyday sort of thing but anything more complex is outside of their realm. Some GP’s make out they have all of the information. They don’t. You need to be seeing a neurologist. If that means you need to go to A&E, I’d be doing it.
Personally, my symptoms fluctuate something horrible. I’ve been very symptomatic, gone to hospital, had scans, only to be sent home because they couldn’t find anything
By the same accord I’ve gone to hospital and they’ve decided that action was needed.
If you feel things are getting worse or more frequent, when do you think would be the best time to follow it up? I say this because one day my wife found me crumpled on the floor. I knew something wasn’t right, but thought it would be OK. Just another of those odd sensations I get, ohh well. Only it wasn’t an ‘Ohh well’ situation at all. That was a bit too late, I should have followed it up sooner. DOH
Get it followed up, what’s the worst they can say “…we can’t find anything…”
Merl from the Moderator Support Team
DO NOT just ride it out! Ataxia is not well understood, nor even acknowledged in many medical circles. I think that this is often due to its “incurable” label. But there are strategies that can be attempted, not just meds. Don’t give up. Look up the neurology department of your local large medical center and don’t just go with your PCP’s diagnosis. We have all found that we must be our own advocates!
Thank you both. The episode settled down by Friday evening but I’m still a bit shaken up by how bad it was. I’m working on getting a referral to my nearest specialist ataxia clinic so I feel like I’ve at least been able to do something practical!
And that alone can be a big thing.
It’s not nice being shaken up BUT we all have to get that point in our own time. I kept getting flogged off as a hypochondriac, 'We can’t find anything. It must be YOU…" so I gave up looking for answers.
DO NOT BE DOING THAT. The sooner you get some answers, the sooner you can make a management plan.
Merl from the Modsupport Team
In the UK, actually getting referred to the appropriate Specialist is far from easy. Our healthcare system (NHS - National Health Service) is very different to having a private health care plan. Our first hurdle is being taken seriously by a GP, they have the power to control what happens next.
As it happens my current Neurologist suspects I have a form of EA… Since the 1990s I’ve endured years of being demoralised by my GP, and been treated as though I was basically depressed. My symptoms took a turn for the worse, I had a seizure and woke up in hospital. But I was misdiagnosed.
Once a misdiagnosis is made it is very difficult to have it overturned…particularly if it is Epilepsy. Episodic Ataxia can be very difficult to diagnose, it can come and go with severity, symptoms can be hard to pin down, often the patient needs to be seen when symptoms are active, Some types are actually linked to Epilepsy and this muddies the waters…
I was proactive in seeking a proper diagnosis for my increasing list of symptoms, double vision and Nystagmus kicked, they were obviously not linked to Epilepsy, I was virtually beating a path to my GPs door in the hope I would be taken seriously.
Action was only taken when I started having unexplained falls. My salvation came when my GP referred me to a Falls & Syncopy Clinic and I had a Tilt Table Test. The results confirmed I had a serious balance problem, and the following MRI showed Cerebellar Atrophy.
I hope you don’t have to wait too long for a referral to an accredited Ataxia Centre, it definitely is the best place to be taken seriously🙂