this syndrome we have, if I can use that word

Do others have this all the time or does it go away and return maybe weeks apart? I've been to three clinics over the last year. I mentioned to one of the GP's a few years ago that I walk like I'm drunk - keep veering off to one side. He said lots of older people have that! Wasn't concerned at all. Now though it's more serious with 2 images. and a feeling of falling forward. When do others notice the most extreme feeling? Do they wear special prism glasses and hope for the best?

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  • Hi Springlove!

    You are definitely not alone with your symptoms. If you're at all

    convinced the symptoms relate to Ataxia ask your GP to refer you

    to a Neurologist who specifically specialises in Ataxia.

    Don't be fobbed off, it'll make you more stressed wondering what's

    going on. There are tests available to confirm Cerebellar Atrophy,

    one cause of Ataxia, other causes can be genetic or trauma.

    Most of us have the eye problems you describe, myself included.

    Nystagmus (bouncing vision) is another symptom.

    I have prisms in my glasses, vision is normal looking straight ahead

    but when walking around the movement involved makes balance

    worse, so it's a trade off really. But, I can drive safely, that's the

    main thing. I also have contact lenses, an occlusal to block out the

    light to the eye causing double vision and regular distance lens for

    the other one, I don't wear glasses and lenses together :-)

    Only after I had falls did my GP refer me to a Falls and Syncopy

    Dept, I was 60 and had complained about balance for over 15 yrs.

    Tests done there led to having an MRI, which confirmed Cerebellar

    Atrophy and a diagnosis of Ataxia.

    An actual diagnosis hasn't changed anything for me, I know nothing

    can be done about it, although research into the condition is going

    on all over the world.

    But, once I stopped stressing about what the problem 'might be' and

    got my head around it, life changed dramatically for the better.

    Sorry to ramble on:-) I hope this helps! xBeryl

  • Hi, Thanks for all the information. Actually I've had an MRI, talked with neurologist, been to ENT and eye unit, and yesterday GP. He's referred me to the Cambridge Addenbrookes hospital, but since you've supplied so much information about yourself, seems like this'll be a 'dead end'. I've got some medical encyclopedias I purchased when I lived in the States. I'll look up and the medical terms you used - didn't know there were that many. Thanks again

  • Hi Springlove

    I was diagnosed with Cerebellar Atrophy/Degeneration/Ataxia four years ago after an MRI scan confirmed shrinkage of my cerebellum. As wobblybee has already stated, there are many types and causes of ataxia. I think this includes two types of 'Episodic Ataxia' simmilar to how you describe how symptoms may come and go? Go into the ataxia uk.org site and you should find more on different kinds of ataxia.

  • thankyou Lain,I will. I've looked up some of the websites but will definitely browse this one

  • Springlove, I hope you didn't feel bombarded with information :-)

    The symptoms I experience also seem to come and go in severity,

    I don't know what type of SCA I have, although my mother had

    similar symptoms but she had suffered an Aneurysm. xB

  • Hi Wobblybee, no actually I was surprised at the number of people with this condition. Do you ever feel sick or get nausea at times? I do quite often but maybe it's nothing to do with this problem. I had a brain abscess when I was eight on the left side, a seizure at age 38 and mini stroke at 60 so I feel I'm a good candidate for any head problems. Chances are (I hope) that this is not what I've got. It takes so long to get an appointment.

  • It is a real eye opener when you do eventually meet other people

    with Ataxia, if indeed that is the diagnosis.

    I struggled for years to find a reason for my symptoms. In 1991

    I had a seizure in my sleep, was diagnosed with Epilepsy and

    prescribed various medications for the condition over a period

    of 15yrs. I don't think the medication did me much good, the

    Neurologist who diagnosed Ataxia dismissed the diagnosis of

    Epilepsy.

    Sometimes I feel nauseous but it could be down to any number

    of reasons.

    If you're generally looking for information, log onto Living with

    Ataxia.org it's a US site basically like this one, but with a lot

    more members. More information seems to come up.

    You can ask to be referred to a Specialist Ataxia Centre, with

    your medical history it doesn't seem unreasonable.

    D,you know what, I actually can't remember what it was like

    to feel any different, this has become the new norm:-) xBeryl

    x

  • Beryl how did you find out you'd had a seizure in your sleep? Do you still have vision problems? I was told to get a walking stick to help me balance plus I had a prism put in some plain glasses. Phew! what a terrible feeling that gave me

  • My husband thought I'd had a stroke, it woke him and he called

    an ambulance. It was Christmas Eve, I woke up in hospital:-(

    I only notice Nystagmus if I tilt my head in certain positions, it's

    frustrating looking along a shelf of books!

    My main eye problem was caused by Iritis, that left me with double

    vision, I've been told it's unrelated to Ataxia. Recently I had Botox

    injected ( by a Neuro Eye Surgeon) into the muscle of the affected

    eye. Sometimes this helps the eye relax and improves vision, it

    doesn't have a long term effect, approx 3mths.

    In my case it wasn't sufficient to do the job, so it might take surgery.

    With this in mind, I've had an MRI and get the results this week.

    Bear in mind, this has nothing to do with Ataxia.

    The first prisms were put in at an Opticians, as the double vision

    became more severe I was referred to a Specialist Eye Dept at

    my local hospital. They were able to prescribe a much stronger

    prism, and in addition to that, a stick on prism. You should see

    my glasses!

    Prisms definitely take some getting used to! They definitely have

    a negative effect on balance. Variofocal contact lenses are the same.

    I always take a walking stick when I'm out by myself. The number of

    times I've misjudged the depth of a kerb!

    Personally, I think you just have to try things out for yourself to see

    what works best for you. As long as you keep yourself safe, anything

    goes :-)

    Story time over for today :-) xB

  • You sound so much like me with your eye problem. My surgeon wouldn't operate. He said give it 6 months in case of a change, then he'll consider it. I got up this morning (not unlike other mornings) and my right eye was directed to the far right. I shut my eyes until it goes back to normal, well, almost normal. That eye doesn't blink due to the stroke and plastic surgery I guess. The whole right side of my face is almost motionless.

  • I had Iritis around 1998, Nystagmus kicked in as well, despite the

    fact that I had regular appts at a hospital eye dept, this wasn't

    diagnosed until 2010. ( I know it was Nystagmus because of the

    difficulty doing research at the library)

    It's my left eye, actually the weakest one, that suffered worst

    damage with Iritis. The pupil is partially stuck to the back of

    the eye and at the same time is moving toward my nose:-)

    My mother had an anuerysm behind one of her eyes, her longterm

    symptoms were very similar. Her eye didn't shut, she had surgery

    but was never happy with the results.

    One of my grandmothers had Bells Palsy, one side of her face was

    affected.

    My surgeon has been playing the waiting game too, I hope her

    plan works!

    It would be nice to wake up in the morning and be able to focus

    properly, unless I'm wearing glasses/contact lenses, I usually walk

    around with the left eye shut.

    You do what you have to :-). xB

  • Hi Wobblybee just reading all your comments. The one that struck me was 'Walking around with one eye shut', I have been doing this for ages. I have SCA type unknown. I am currently waiting for a 2nd appointment to see a neurologist at a specialist Ataxia clinic, I must remember to mention this.

    Keep smiling

    Berejena

  • Hi Berejena, you mentioned 2nd appointment. What did 'they' find in your first appointment? Did they name it as Ataxia?

  • Hi Springlove, I was diagnosed as having Ataxia in my 30's I'm now in my 50's. I'de never heard of it. I had no symptoms for 10 years.I did'nt know these specialist Ataxia centres existed till I read an article in The Ataxian quarterly magazine. These centres are in Oxford, Newcastle (the one I went to) and other locations (Sheffield I think) I can't find the article. Anyway you need a referral from your GP. I was there over an hour seeing a Neurologist, then a Professor, who were very thorough. I had blood taken and signed a form for DNA testing which I was very pleased to oblige. All in all it was a very good experience, I just wish Id'e known these centres existed earlier.

    Take care

    Berejena

  • Well thank you for that. I didn't know about it until my 3 doctors couldn't find a reason for this balance and double vision coming back. Thinking back to 1976 though when I was competeing in horse riding, I actually have a photo where I'm hholding my head on one side so as to see properly. In the past 5 years I've often waited at the bus stop and looking at the lines in the road and the traffic coming towards me - there was two lots. The further away, the more apart the lines were and came together closer up. More recently again I've gone to a GP and TOLD HIM I've got Ataxia. He's referred me to Addenbrookes in Cambridge. I have to get a train and taxi. I don't know of any centres more locally - must have a look.

    Jean

  • Jean, I have the same experience with lines, it's disconcerting

    to say the least :-)

    Bear in mind, it's not uncommon for GPs to have little or no

    knowledge about Ataxia, it can be really frustrating trying to

    get referred to someone you're convinced can help you.

    But, stand your ground, a Neurologist specialising in Ataxia

    is your best bet, even if you have to travel some distance it's

    worth it.

    My eye problem has developed into a squint. I'm having an

    operation shortly to attempt to correct it, if it works, it would

    lessen the double vision. I'll still need prisms but not as strong.

    Berejena, I volunteer at Newcastle Ataxia Centre, hope to see

    you next time :-) xB

  • Hi Wobblybee I have to haveMRI scan at Newcastle next month, may see you there

  • Hi berejena :)

    That would be great but Newcastle Ataxia Centre clinic is at

    Newcastle General Hospital, that's where I volunteer.

    There has been discussion re volunteers being at the RVI on

    Neuro clinic days but due to the lack of space it was shelved.

    It's always busy there, there was the question of where to sit

    and chat in a relaxed atmosphere.

    Personally, I think it would be more useful if we were at the RVI,

    I feel that once people have been diagnosed and are perhaps

    returning for follow up appointments, they are more inclined to

    feel the need to chat.

    I had an MRI myself a couple of weeks ago, the staff were very

    nice :) xBeryl

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