3 weeks ago I really felt that there wasn't a point to living. Luckily my pooch jumped on my knee and licked me to death, my 16 yr old daughter went through a 'boy crisis' and if I could have kicked myself I would have!!

One of my lovely carers asked me if I had Ataxia. She had a client in the past who had exactly the same problems I was having with hand spasms and tremors. I hadn't even heard of it. I never investigate illness on the web as I have had some really wierd and wonderful symptoms over the past which have never been allocated to a particular condition. This time I did. I got straight on to the doc and have had blood tests, I'm going for the results on Wednesday and if she doesn't offer to refer me to a Neurologist I'm going to insist on it. I got a bit down the other day and my other carer suggested I look for support sites to see whether my symptoms really did match others and found this. I've also joined another site in the US.

I've read past blogs and questions over the last few days and I can't believe why I haven't been tested for this over 20 years ago!! I was tested for MS but that was 'inconclusive'. Everything from being asked if I was drunk at 10 in the morning by the local grocer, misjudging steps, falling up and down stairs, walking into hedges and walls as if they were magnetised, throwing a meal across the floor in frustration after a friend offered to feed me, right down to jaw snapping when falling asleep, (something the Speech Therapist hadn't even heard of), all of it is here!!

I'm now at the stage where the hand spasms are constant, walking .around the house is getting more painful, I can't write or sign my name (a bit embarrassing with Tesco deliveries), I get really tired, and days when I'm better off and safer in bed to be honest.


At least I now know that I haven't been going mental all these years, these things did and do happen, I haven't imagined them and I'm not a neurotic hypochondriac - THANK YOU ALL - the courage you've all shown in your candid Blogs and Questions have been a Godsend to me.

24 Replies

  • When I mentioned to my GP I was using this site he said I should not take too much notice of the internet but I have found a lot of help from using it.No one understands better than fellow sufferers how we feel from one day to the next. I have been told that there is a 6month waiting list to see a councillor. In the meantime I get a lot of help and support from this site.I hope you will find it as useful.

  • Hi Laddie!

    I was advised not to take notice of the internet, I think that referred to looking

    at medical information and mis-interpretating it. Obviously we need support

    and questions answered, who else better to give it than fellow ataxians.

    I bite my tongue, it was worrying me and I posted it on Living with Ataxia (US

    site). I was surprised but at the same time relieved to find there were loads

    of others with the same problem! It won't stop the biting but having my mind

    put at rest is priceless.

  • Dear Laddiie

    Well done and keep your spirit up I think doctors mean well about not taking too much notice of the web but this one gives us all a chance to 'talk' to each other and you feel reassured that we are all in the same boat I fell over yesterday while with my wife(Poor thing!!) and we just both laughed instead of crying (I am 6'2 and she is 5'4 )

    Look after yourself and keep smiling Ted

  • Dear Zhez

    I always sign for Tesco deliveries by just putting a large wobbly cross. This is a perfectly acceptable way to sign for something on those hand-held electronic devices (don't remember what they are called).

    Best wishes


  • Hi Conan, I'm still in the denial stage I'm afraid. I burst into tears last time...bit of a wuss I know. The delivery lads are great though....

  • By the way, love the pun in your addy! haha!

  • At the point of diagnosis I was in such a state mentally (with going around the houses for years) that the Neurologist suggested counselling, via my GP.

    The person I saw had no knowledge/interest in the specific problems of ataxia. She was

    a basic counsellor, I've made more progress with self help books such as mindfulness etc.

    The one thing that really did help me move forward, was participation in a group discussion.

    This was made up of women also battling types of depression. It was a small group, led

    by a very friendly warm counsellor. We quickly opened up and supported one another,

    realising the burden eased as problems were aired. What was said in the room, stayed in

    the room. Some people prefer one to one sessions specifically with a trained person, but

    I can say what I did was very helpful.

  • Hi Wobbly

    I've had 'one of those lives' and a bit scared that if I go to counselling I'll have to revisit things I don't want to.......I wonder if it could be done specifically related to certain issues?

  • Zhez don,t let that put you off. I certainly have memories I'd rather

    not dwell on, and I didn't discuss any of them. I just aired current

    stuff I felt was getting to me, and weighing me down. My health,

    some everyday family niggles. It was all women, different ages,all

    with problems that they were too close to, and couldn't deal with

    logically. |A small group, we listened respectfully to each other,

    supported, never judged. The counsellor would usually lead with

    a subject, just to start interaction in the group. Let's face it what do

    women do best, talk!

  • When I went the other week I staggered in with the support of a husband wobblybee I had to fill in that awful questionnaire about my well being.All I wanted was some help in going from mobile to immobile.My brain(the undiseased bit) is still active but the body just wobbles about.I think I can still do things but although the spirit is indeed willing the body is knackered and I just want to sit down where I feel safe.

  • I'm a bit like that, I'm ok tottering around the house where I know I can grab hold of something but get me outside or somewhere unfamiliar and I'm useless.....I had to fill some forms in recently about that stupid Bedroom Tax and even though a woman from the HA came out to write them I still couldn't think straight, talk about 'senior blonde moment'.........

  • I know the feeling of security above activity. I look at jobs I could do but don't do them, I have no inclination to actually do something. Perhaps these negative feelings will disappear as some other problems have done gradually. As I have come to terms with my disability I approach each problem and realise that the difficulty is my attitude to it.

  • Hi Laddie, I wrote you a reply in the general replies because I've only just seen this reply bit...:)

  • Hi Marie, When I went to the group session, I was terrified I would fall over/bump into

    something etc. Whenever I go somewhere different, something kicks in and I wobble

    all over the place, this unnerves me, and makes it worse. Familiarity with the people

    and place helped eventually, believe me it really was an effort to go, but for me was

    worth it. I hate filling in forms, decisions on what to put! My brain is far more active

    when I'm sitting down and stable, on the move, ugh! At first I worried about slurring

    when we talked but this also settled down, people were very kind, we gave each other

    as much time as it took to get something aired. Plus, I enlightened them about SCA!

    best regards


  • Dear Zher, I'm so glad you're feeling better now! No, you're not mental or a neurotic hypochondriac! Good for you for wanting your GP to refer you to a neurologist! I'm assuming you've had an MRI, as you mentioned "inconclusive" MS. If it was done 20 years ago, quite possibly another one would be in order. A hallmark of ataxia is atrophy of the cerebellum, which can be seen on an MRI of the brain (the cerebellum is also known as the "little brain". It's located at the bottom of the brain and is attached to the brainstem). I was diagnosed 10 years ago with Sporadic (idiopathic) Cerebellar Ataxia (unknown cause). I have atrophy of my cerebellum. Of course, the neurologist you see will order all the necessary tests, depending on what they may be looking for. I see a neurologist the specializes in ataxia. Initially though, I was diagnosed by a "team of neurologists", as they were looking for several different neurological disorders. There are different kinds and degrees of ataxia, some hereditary, some not. Several genes have been identified, but I imagine several haven't been yet. Anyway, this site is great for support and understanding, as well as the US "Living with Ataxia" site (I live in the US). "Ataxia UK" has invaluable resources and information, as well as the"National Ataxia Foundation" in the US. I've said this many times before: you are not alone in your journey! My best to you..., ;o)

  • Hello Khez

    I live in Elburton so not that far from you. Several of us suffering from ataxia meet regularly at the Holiday Inn and we help each other, it's nice to see other people. You must join us, you would be most welcome. I can give you details.

    Always remember you are not alone, we will help if we can.

    Take care


  • Hi Fifa, that would be great!!! Would my carer be able to come? It's good to know there's others so local :)

  • Hello Zhez

    Carers are more than welcome.

    Take care


  • Thank you all for your comments and suggestions, it's a great help.

    Hi February

    I had a lumber puncture for MS but no scan. Last year I collapsed and then couldn't write or use the keyboard, a doc came after I recovered and said I needed to see a neurologist. At the same time though I had another condition (damaged nerve shaft in my neck) so my Rheumatologist had referred me anyway. When I had the MRI though it was only done on my neck, not my head. I got some blood results yesterday but the doc wants to do some more and recheck another one so I've got to wait til 3rd June to discuss the results. Watch this space.........:)

  • Hi Laddie, the site's already helping. I was working until a year ago and volunteering until last October. In a way I'm lucky because I had to start using a power chair 4 years ago due to the arthritis and 'unsteady gait', I also had a year of sick because of the nerve damage so I've already gone through most of the despair that losing mobility and the ability to work brings with it. I used to be an Adult Tutor and Guidance worker so this new symptom, not being able to write due to spasms and shakes is really getting to me now. tbc

  • I put tbc because I'm having difficulty reading masses of text so I'm surmising some others are too....

    Going back to Advisor mode I've decided to concentrate on things I can do instead of things I can't. I've always worked so being a 'stay at home' Mum is very new...a bit late now as she's 16 but nevertheless....

    I've just got a new little dog.....he was very naughty, very dirty and a general nuisance so his owners decided to get rid of him. They didn't realise that 'designer dogs' - he's a cockapoo (I call him a offence meant) can be very neurotic and locking them in a cage for up to 16 hours a day is downright cruel. Now he's very clean, hasn't wrecked any furniture but chewed a few things, an absolute pain in the rear but so adorable and funny he's a delight. I'm using his natural sneak thief skills to train him to empty the washer for me, so far he'll get things out but then I have to retrieve them, haha!

  • Zhez, it's a very kind act you did, rehoming a neglected animal.

    Our current cat chose to live with us, after troubles of some sort

    at his previous home, which was a neighbour's!

    How people can ill treat animals is beyond me.

  • I had a wonderful dog - called her Dollar - jet black she was, went everywhere together, except work and the bathroom of course ha, ha.

    Can`t explain how I felt when she had to be put to sleep, it broke me up good and proper holding her as her life slipped away..............

    Best mate I had since leaving the Andrew. Loads of fun and loads of walks, aye she was a good `un.

  • I also have my old girl, Lady, she's an epileptic 3 legged border collie, 11 and a half now, bless her. We used to look great on walks, me with the crutches and her with the 3 legs, what a match, haha! Have you thought of getting another John? I know you can't replace Dollar, but the benefits are enormous. I've started training Teddy to the chair now, only had to do one emergency stop and he got tired and sat on my knee coming home, it was great though :)

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