Hi I never been told what ataxia I have My balance is bad, speech OK but my sight is getting delayed- Slow to focus when I move my eyes

[tedjohnson]

I have been told no use going through tests as there is no cure or treatment I accept this advise but am worried about a muzzy head and slight delay in focusing Is this something my GP should be consulted with ? Also has anyone else got this problem?

[jurgen]

your GP should send you to a MRI/MRT

well,people disagree on the use of tests :

I think tests are useless- whereas an MRI/MRT

is o.k.

Regards

Jurgen

[neta]

I dont thing tests are in vain. You might have a gluten issue or a an auto-immune issue. See a neurologist and have a battery of tests. IT might be fruitless at the end and they might hit a brick wall but maybe they will decide you case is treatable. Good luck Neta

[Hidden]

Hi I partly agree with both answers but I would say have all the tests you can just don't expect to much from them,after all a negative result is a result it just rules that particular thing out

[tedjohnson]

Many thanks jurgen, neta & johnpa I will contact my GP and hopefully he will send me for an MRI/MRT

Has anyone out there got the sight problem I am experiencing Delayed focusing ?

[silkwood]

I get a problem with slow focus.Optician said sight is ok apart from needing reading glasses which I have.

I think part of the reason I drop things is a mixture of ataxia and eyes focussing.

I am trying to do one thing at a time.That helps.I used to multi task now I think what is the rush?

Opticians thought I would not be able to adjust quick enough for bifocals.

Its hard when you see all those ads on telly and you know it doesn't apply to us because muscles are the problem not purely sight.I had cerebellar degeneration when I had my MRI. At least that explains things and is more definite.My Ataxia is unknown too.I have had the usual tests.No Genetic link,no evidence of auto-immune deficiency and none of gluten.Just a long road of eliminationleading finalllly to accceptance.Its al la bit of a mystery.

[jomo50]

Hi

I have a similar problem. I have nystagmus and non-binnoccular vision. I have had prisms fitted to glasses which I never wore before, to correct this. I can now see clear straight ahead, but sideways vision is compromised, although shopping is an issue.

As for the tests, have what you can. You never know they might discover some thing positive.

Good luck, I know its hard, but we all have to remain positive.

J

[wobblybee]

Hi!

I know I have cerebellar atrophy, and also permanent eye problems due to Iritis.

Re muzzy head, something I've become well familiar with over the years, even

before having an MRI and being diagnosed.

I've tried bi-focals and vario-focals combined with prisms, managable but both

seemed to make balance worse for obvious reasons, but I insisted on trying.

Currently I have one Occlusal Contact Lens worn with glasses. This seems to

be a better option than prisms to banish double vision, and doesn't have the

same adverse effect on balance. Of course you have to come to terms with the

drawback of having to turn more, being one eyed.

On the whole I agree with Marie, and multi-tasking is something I aspire to!

[wibblywobbly]

Hi I have SCA - not diagnosed exactly yet, but still hoping.

I think it's good advice to def have a MRI brain scan and maybe your veterbrae too. If nothing else it can rule out other things.

I have often have a fuzzy head, and it gets worse the more tired I am. I alway try to have a 2 hour sleep in the day. I find this helps a lot.

[Willowpuss]

The visual symptoms you describe also apply to me,going for a brain and spine MRI scan next week.I have had Ataxia for over 20 years but it has worsened the last few years

Wishing you good luck with any future tests you have.

[february]

I would see a neurologist that specializes in ataxia...,;o)

[jeanjeany in reply to february]

Easier said than done in my case, my GP won't refer me and my neurologist at the QE has signed me off, thank goodness for Ataxia UK i'll get some advise off them.

[grumpygranny]

You must of course get a diagnosis!! Get referred by GP to Neurologist is I would think the first step. Then get via him the appropriate tests to find out which Ataxia you have. (MRI/T scans; maybe genetic tests?etc). A diagnosis will help you deal with the symptoms - physically and emotionally - especially being able to share on this site. And as for "no cure" - how defeatist is that!! Ataxia UK is striving to find one - and even as we speak there are research trials going on - for cure and for alleviation of symptoms - so don't let anyone tell you 'there's no point! - ((How Very Dare They!!)

[shazam]

I am yet to be told which form of ataxia I have and I tick all the boxes for msa or ca. (?).

In hindsight this has been creeping up on me for some time, especially obvious since august 2012. My double vision since then has cost me a small fortune in television engineers!

[wobblybee]

Like most other people it took me years to get a diagnosis, during which time I spent a small

fortune on various types of glasses. I've had both bifocal and variofocal, both with prisms,

obviously they weren't helpful as far as balance was concerned but I had to try, no-one else

was going to help me! I would recommend prisms in glasses to anyone who has double

vision, that is if your Nystagmus (bouncing eyes) aren't too bad.

[february]

Yes, I have vision problems, especially in my left eye (blurriness/double vision/focusing). I've had an MRI every five years since I was diagnosed (eleven years ago). The left side of my cerebellum is more effected than my right, hence more vision problems in the left eye (I have more trouble with the left side of my body too). ;o)

[silkwood]

2 years on and I think there is a combination of symptoms. Focus is getting worse so I have had to adapt ie

Stop and look as opposed to looking around while you are moving-not so good when you come to a crossroads on your scooter and you have to rely on your hearing and launch off into the unknown and hope for the best.

[wobblybee]

I'm seeing a Vestibular Therapist, she's treating me for Benign Paroxysmal

Posterior Vertigo. Symptoms include - dizziness when turning lying in bed,

dizziness when tilting the head back etc.

Basically this problem is caused by fine crystals being in the wrong place

in the inner ear, a specific head/ neck manoeuvre can be done to shift them.

At each stage of the manoeuvre the therapist watches the patients eyes,

nystagmus kicks in and when it subsides, you move on to the next stage.

I had this done twice last week and was very surprised by the results.

It did actually reduce the symptoms.

The manoeuvre itself although not painful brings on horrendous sensations

of vertigo but the results can be worth it. xB

[adnyl]

I do hope you are seeing a Neurologist and if so they should be doing genetic testing and give you more information. Dont let them get away with fobbing you off. You have rights.

I have the 'muzzy' head thing and sometimes in the morning double vision.

my neurologist is being lovely and sees me 3 monthly and has referred me to OT to see what fittings I need in the house to help and also to the speech team and his neurology physiotherapist. They are all helping me a lot. So push for your rights. As a nurse I know it all comes down to money!

Do take care and very best wishes,

Adnyl

[jneilw51]

I did read an article about Ataxia which claimed that, in some cases, trying to walk safely (With whatever you use to stay balanced) as much as you can, could slow down the rate at which your balance gets worse over time. I think that the idea is that, by walking, you are actually practicing trying to control your balance when walking. When you don't practice some things, you become less skillful at doing those things. So, if you ever avoid walking, it kind-of makes sense that your ability to walk could get worse, even without the Ataxia. For me, it is just something to think about.

[brighouse in reply to jneilw51]

Hello....Having just been reading through the replies by various sufferers of ATAXIA in its various forms, Will anyone tell me what is meant by MRI/MRT?.

I was told there was no cure for Ataxia in general. I have been suffering from this problem for 2years now, and apart from the initial diagnosis by a neurologist - I have become unable to write clearly or even draw a straight line! and as for walking, I can only walk about the house where using the furniture for balance....nor can I go out of the house without assistance - having now bought, first, what I call my three wheel trolley and finally, a wheelchair if I am taken any distance i.e. shopping etc.....so, What are MRI/MRT?.....I am a 90 years of age Male, live in OLDHAM Lancs.

[jneilw51 in reply to brighouse]

(MRI) is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body.

Since someone can have Ataxia along with other problems, only your doctors would probably be able to accurately tell you what your symptoms are being caused by. The MRI is just one tool, like an X-ray, that they may use to try to see what is going on inside of you. Congratulations on making it to 90!