Functional Ataxia

[jaffa12]

Has anyone here been told that Their Ataxia might be functional as their scans have come back negative. Does anyone else have lots of symptoms but tests has been negative.

[Iain_100]

Not sure what Functional Ataxia is. "Disfunctional Ataxia" though

But, yes, lots of negative tests. Not uncommon though (around 50% of ataxia diagnoses are unexplained).

[Vion in reply to Iain_100]

I love your comments you just know exactly how to make me smile. Vion

[Iain_100 in reply to Vion]

"When you smile, the whole world smiles at you"

It's not always easy - but it ALWAYS helps

[nigelrheath in reply to Iain_100]

Keep smiling, it makes people wonder what you have been up to!

Nigel

[margaretm]

My tests- 2 MRIs and blood tests have come back 'normal'. At this point, I decided to get off the treadmill of endless tests and looking for a label. I now focus on helpful exercise, targeting my gait and nystagmus. I will continue to see my neurologist, but feel better since taking at least some charge of a condition which seems so unpredictable and cruel.

I wish you all the best!

[Vion in reply to margaretm]

How long have you had Ataxia? Drs don't give a time period it's so frustrating because I want to go back to work but worried how I will be on the bad days.

[margaretm in reply to Vion]

I have had problems with balance, dizziness and gait for around 7 years now but these symptoms were interrupted when I had breast cancer four years ago. Ironically, cancer has far more of a structure and narrative than ataxia- it is more common, better researched and understood: you never beat it, but you can respect and treat it. I was able to go back to work, full time, despite the ataxia symptoms which necessitated using a cane and accepting the need for restricted movement between work sites; eventually, I retired at 60 a year ago. The thing with ataxia is that it is unpredictable but, as a general rule, you should be able to work although you may have to alter your patterns. I do not know where you work or what you do, but I know that when I was working, I reminded my employers that they had a duty of care to me, that I was covered by the Equality Act and that they had to make reasonable adjustments for me. I was given an Occupational Health assessment, arranged by my HR department. All this was possible because of the size of my employer and the nature of my work. Depending on what you do, you may want to consult your union or even an employment lawyer. All this requires energy and I know that for us, permanently exhausted by the demands of just getting from A to B, that is not easy. Good luck, Vion!

[Vion]

Hi yes, diagnosed as having Functional Ataxia since July 2015 been of work and struggling to go out mostly stay home in my safe zone. Dr said its Stress and i need to keep active but rest when need to. All test MRI,blood work,ECG, scans came back normal, yet I have constant pressure in my head and can't walk alone without a cane or support. Vion x

[Nogreatername in reply to Vion]

Vion, I just came across this page and have the exact same condition.

I have had severe headaches for seven continuous weeks now and even spent a full week in the hospital. All tests, including a spinal tap, blood work, and six MRIs and CT scans came back normal. My hospital has told me they can do nothing more for me, yet the headaches and ataxia persist.

Did anyone on this page receive any additional testing that actually caught something or has anyone seen relief from their symptoms? I have been wheelchair bound for over a week, not because my body is week, but due to pressure in my head and neck and the feeling that I'm slipping on ice when I stand up.

Thanks

[sheild]

I know how you feel, it's not much help being told 'everything is clear' when your legs and head are going sideways, if at all. For all that is known about ataxia there is probably as much as yet to be unravelled.

You know when things aren't right even if there isn't a definite answer, I was staggering around with a quad cane up until Dec 2013, been housebound ever since. Just got a wheelchair but struggling to get around uneven ground, OK going round Tesco's spending hubby's money though!

I think there is a point where you have to stand up (with assistance if necessary) and make it clear that there is a problem that ain't going away anytime soon. I'm still unsure of the nature of mine, diagnosed July this year with Mitochondrial disease defects in Complex 1 and also Complex 1:2, which can result in ataxia.

Doesn't really matter in some ways as to the why/how, it's the fact that the effect is there just the same as 'regular' ataxians.

[Iain_100]

Loving the very positive replies

Yes, it can be very frustrating waiting for a positive test result to "prove" that what you are feeling is real (in my experience, it was convincing others that it was actually happening that was the hardest part).

But as frustrating as it is (and it is REALLY frustrating at times), it is really worth persevering with the tests, seemingly unending at times.

The diagnosis when it comes doesn't make a jot of difference to you physically. You still have ataxia.

But the psychological benefit of at least knowing what is causing the problems (even when not a definitive diagnosis) is immense.

Smiling is the best (only?) treatment.