Unsure

[Vion]

Recently diagnosed with Ataxia all tests came back normal including MRI but yet I cannot walk without a cane or adult support. My hands tremble and head throbs plus my Vision goes blurred as the day goes on. Been 3 months Dr keeps telling me to rest. Unable to see a neurologist until January. Days vary most are bad can barely walk, today was able to cook a meal sitting down then got really tired and weak. Is this Ataxia or just stress.

[AbbeysAtaxia]

Hi.

First of all, you're not alone.

Ditto to most of the above, but I mainly only get Intention Tremor just as I go to pick up or touch something.

You don't mention which tests other than MRI were normal (did they do blood tests for antibodies, lumbar puncture etc?), nor your age group (20's, 30's, or 50's, 60's?) as that makes a difference as to likely causes.

The tremor interests me. Is it a hand tremor when you move (kinetic tremor), only when you reach the target you're aiming for (intention tremor), all the time when moving or at rest (essential tremor, which can come with ataxia symptoms), or only tremor at rest (Parkinson's)? And do you have very clear cerebellar signs (e.g. intention tremor as above, can't walk heel-to-toe with eyes open, incoordination in legs as well as hands), or is it just a loss of balance (ranges from Meniere's Disease, to Parkinson's Disease)? Anything below sound familar?

How to detect Parkinson's (You Tube video). Parkinson's usually has a normal MRI scan, which would fit yours. If you have 2 or more of these symptoms, ask your Neurologist about Parkinson's:

youtube.com/watch?v=rPI1J56...(Not working as expected?)

Meniere's Disease, an inner ear disorder:

nhsdirect.wales.nhs.uk/ency...

Hope these help.

Yours,

Abs

[Vion in reply to AbbeysAtaxia]

Hi, I am 46 and have tremors all the time I can't walk heel to toe as totally unbalanced. I had Romberg test saw a neurologist in A&E but said everything was normal blood test etc sent me home saying functional Ataxia due to stress. I have since got worse to no avail. Having Acupuncture but still no change. Thanks for advice.

[margaretm]

This is a really difficult time for you as you are bound to want more answers. Like you, MRIs I have had have come back clear, as have blood tests. My experience with Ataxia has been very different to my earlier experience with cancer, where diagnosis and treatment have followed a predictable structure and pattern. I have now decided that, for me, the only way to cope with the poltergeist Ataxia is by treating the symptoms rather than looking for a label or diagnosis. I have found my meeting with a neuro physiotherapist very helpful- your GP can refer you- as it provided me with exercises I could do in my home over the course of the day. I also use a cross trainer when I can. It is natural to feel stressed and anxious, but I feel that creating small goals can help. Good luck.

[Iain_100 in reply to margaretm]

"I have now decided that, for me, the only way to cope with the poltergeist Ataxia is by treating the symptoms rather than looking for a label or diagnosis."

That is one of the best pieces of advice ever. Well said Margaret!

[Iain_100]

I feel your pain Vion!

Yes, it is VERY frustrating. Especially as you are well aware of your deteriorating condition while you watch the medical wheels turning at a glacial pace.

It took 17 months from first showing up at my GP with pretty obvious problems, to the eventual ataxia diagnosis. And even although a diagnosis has been made, all tests bar one were negative (the only positive test was the electrical signal test done by a neurophysiologist). So, even though doctors know the general cause of the symptoms that I experience, they don't know the exact type of ataxia behind it.

This is a fairly common situation for the time being. Around 50% of ataxia cases are from unknown causes.

What you are experiencing is normal though. And it is ataxia that is causing the tiredness. So your doc is right. When you are tired, rest.

But when you are not tired, be as active as possible (without overdoing it)!

And try not to worry too much (easier said than done, I know). Ataxia is difficult enough to deal with on its own. Worrying just means that you also have stress to deal with.

And smile

[Vion in reply to Iain_100]

Thanks. The sun is shining and it is a good day.😃

[nigelrheath]

Dear Vion

You have found a place where people understand your situation and the frustration you feel at the apparent abandonment of our health service.

Ataxia is not a well researched condition and its effects are often unpredictable.

As Iain says, rest when you need to and exercise when you can.

I think the psychological effect of ataxia in the early stages can lead us all to stop doing things and focus more on whatever has become difficult.

I have put together a web site, which has more to be done yet, full of ideas on how to combat ataxia. In particular look at the page about the diagnosis..

Ataxiafightback.wordpress.com

Keep writing on this forum as I have found there is great support to be had from the folks on here.

Nigel

[wobblybee]

Dear Vion😊

My recollections of how Ataxia felt way back when are pretty vague now. I do recall symptoms were variable and confusing. A deep fatigue could be overwhelming even after the slightest effort. Mental multitasking was very tiring, I think that brought on fatigue.

My sight was greatly affected at one time. It started with double vision and nystagmus ( bouncing vision when glancing in a certain direction). If you have concerns about your sight, ask your GP or Optician to refer you to the Eye Department at your local hospital. I've received wonderful care at mine. 😊xB

[Vion in reply to wobblybee]

Thanks. I wanted to ask how you cope with working. I am signed off at the moment but as a teaching assistant worry how the effects of my walk and tiredness will affect my ability to cope not to mention the H/S aspect. I did a trail run of getting the bus to work but the effort alone was a hard task that I was in tears by the time I got in and could not function at all hence why I am on sick leave.

[wobblybee in reply to Vion]

I managed to work for a while until symptoms became overwhelming.

You just know yourself when it's the right time to make a decision.

Coping with a bus journey must be challenging. I remember times similar to that, it was confusing, frustrating and exhausting. I just pushed myself on but it seemed to make matters worse. This was actually while I was trying to find a reason as to why this was happening to me.

You need to be tolerant and kind to yourself. Rushing around trying to keep to a regular schedule will be tiring. Being a teaching assistant must be very demanding and require lots of concentration but at the same time very rewarding😊

See your GP, it could be helpful. Best wishes 😊xBeryl

[Iain_100 in reply to Vion]

Totally agree with what Beryl says. You, and only you, will know when it's time.

One thing to consider, and it is to be expected to only become more of a difficulty: Physically doing the current task, and mentally preparing yourself for the next.

Eventually, doing just this is impossible. You have to concentrate 100% on the current task until it is done, THEN start to think about what comes next.

This might feel trivial to some (I personally know that it is very hard for non-sufferers to understand). But it is not trivial at all. Eventually, this is one of THE biggest obstacles to be faced. And being a teaching assistant is easier when you can "think on your feet" perhaps?

Employment can bring immense personal satisfaction. It also maintains many of your social links. Losing your ability to remain employed does not necessarily mean that you lose overall personal satisfaction. Or that you lose your social links.

They just have to be found in other ways

Have a fab Sunday!