Feeling very tired and disorientated

[JillJ]

Hi, was diagnosed with idiopathic late onset cerebellar ataxia back in mid December, but when I saw neurologist in March he said it was mild.  He tested for coeliac disease and did genetic testing, both of which have come back as negative.  I am also having a CT scan in a week or so.  Also had to arrange to see NHS physio but appointment is until mid May.  At the moment everything is 'very mild' as the neurologist says and I know my symptoms, compared to some people, are probably extremely mild, but to me, there seems to be a definite change in the past few weeks.  Today I went into town, parked and walked just a short distance ( a few hundred yards) to go in specific shops.  To say I was relieved when I got back to the care was quite an understatement.  I feel very 'heavy footed' when I walk, and seem to have difficulty 'taking in' everything, making just being out and about very tiring on my eyes.  I am now constantly aware of planning my route before I set off to walk anywhere, and try to avoid steps (down) and uneven surfaces.  At the moment I don't need a walking aid, but looked rather longingly at the disabled spaces nearer the shops, thinking, perhaps it won't be long before I would be grateful for one of those.  Sorry, just feeling really down about it all at the moment.  

[wobblybee]

Jill, I suspect most us reading your post would be in total agreement with your comments🙂 The unsettling 'symptoms' you've noticed are commonplace, very tiring and disorientating.   

Shops can be a nightmare, so much to look at, bright lights,  chrome fittings etc.  Not to mention crowds of people, and the constant background babble🙄  I was often worried in case I accidentally fell into a display, or knocked something over because I didn't notice it.

Mild isn't the right word to use when giving a diagnosis,  the same thing was said to me.     But that's not the case when you're the one trying to cope with challenging symptoms, and not all challenging symptoms are physical.

I had experiences like this for years before I was diagnosed, and it was frightening, I can empathise totally.

The main thing to remember is err on the side of caution, keep yourself safe, even if it does take longer to get somewhere, or complete a task.

Don't stand up too quickly from a chair,  steady yourself before walking off and please remember not to stand too quickly after bending down🙂  Leaning back can cause dizziness.  Perception of depth is compromised, as is spatial awareness.  Pause before stepping off kerbs, I fell off one just the other day🙄  I have a rollator, uneven ground makes it vibrate and diorientates me completely.  You may notice slurring, or you might forget a word completely.

I have double vision and nystagmus, combined with compromised balance, outings can be a challenge, interesting anyway😏  I have learned to live with this but it can still catch me unawares🙄  Sitting still,  watching television or whatever, I can be lulled into an unreal sense of 'normality', until I attempt to stand up🙄  It's the same when I wake in the morning, until I attempt to sit up.

You may feel that multitasking becomes stressful, decisions seem to be be harder to make too.  Cognitive abilities and difficulty controlling emotion can seem erratic at times.  It's very helpful to make yourself as informed as possible, know the facts.🙂

I hope this hasn't distressed you, this is my experience of ataxia🙂  Neurologists are ready to hand out a diagnosis but beyond that you'll have to research facts yourself. See ataxia.org.uk and ataxia.org

Best wishes 😊xBeryl

[JillJ in reply to wobblybee]

Thank you for your reply Beryl.  I work from home, so I must admit that when I'm sat in my little office, then I feel fine.  It's just when I get up that I seem to then bump into walls as I walk into the kitchen to make a coffee!  At the moment I feel like I'm not going places because I feel so aware of myself.  I am used to walking quickly everywhere, and nipping up and down steps etc, in and out of shops, and now I just seem so clumsy.     Had an interview for a job today, but actually emailed my apologies, because even if I got the job, I know that I would find it difficult to work for a full day, or run up and down stairs to different departments.  Today out in the car, I just felt a little jittery, can't explain it any more than that, but I think you have said before that it could all just be down to multi-tasking, and I suppose we do a lot of that when we're driving.  Thank you so much for your support.  I think it's difficult to explain to people who don't have it,  because there seem so many varied symptoms at the moment,

[cymruralf in reply to JillJ]

Hi Jillj

I agree with everything that Beryl has said reading yours and Beryl's posts are all to familiar. Have you seen your GP most will be unaware of your condition. I took a lot of information to them from the Ataxia organisation which assisted a lot. I also asked for any support they could suggest. I also got referred to the Ataxia clinic as per the Ataxia site. I also got the GPs support to get a blue badge. You must try and keep active

Colin

[tedjohnson in reply to JillJ]

Hi Jill

Beryl has said it all and so clearly😃😃.  Over the years I have found her to be so helpful and encouraging. Recently I wrote about my eye test and she had similar experience which again is very reassuring.   WELL DONE BERYl  you sound a very special person.    

Best wishes. Ted

[sheild]

If the doctor is querying the effect of gluten alongside everything else then you could ask about gluten ataxia assessment, the top doc is at Sheffield. We are waiting to go along for my assessment in May following a number of cancellations.

It might be worth discussing about the usefulness of a quad cane at this stage, I used one for a few years and it gave me an extra stabilising 'foot' to reassure and support while outside. In the end I was struggling so much that leaning into it hurt my shoulder too much and by then my balance was almost zero outside. Mine is a snazzy pink with ergonomic handle, very comfy, got it from amazon USA for around £25 inc P&P, it has a small base so it is not too cumbersome.

[Shirley01]

Hey there I know how u feel.  I'm going to an holistic dr. to see if she treats ataxia any different.  I hope she can improve my quality of life living with ca.  I'm down for new treatments.

[Rubydubys]

Hi everyone...love reading these posts even though i am not a sufferer but my 6 year old daughter is. It helps me understand what she is going through, especially when we are out and about. I have 3 other children, 5, 9 and 10 who are fine but Ruby usually wants carrying or is falling over. Reading these posts helps me understand why...thankyou...

[february]

Dear JillJ, Ataxia symptoms and progression are different for everybody - don't be hard on yourself! Yes, Beryl said it all so well! I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic, unknown cause, symptoms 24/7) twelve years ago, although I had very minor symptoms starting about eight years before diagnosis. Like you, I had celiac testing and recessive and dominant genetic testing for all the known ataxia's, which was negative. Recently, I gave vials of blood to have genetic "genome" testing, as my neurologist suspects a rare type of recessive ataxia which may be found by this means. Still waiting for results. Anyway, I was very healthy, active and athletic before this. So this is my new "normal". I started using a cane when I leave my home about five years ago, as I had a bad fall where I severely hurt my back. You might want to consider using one as it will afford you more stability. Also, physio should be a help! Rest when you need to, as ataxia causes fatigue. My best to you...,;o)

[Pec2884]

Thank you Beryl. You always seem to clear up some " unknowns" for me. JillJ your heavy footed feeling and confusion at times is familiar to me. I am also at what seems to be the beginning of a long journey that will change what we knew as normal. I just wish I could sit down with a knowledge person and talk about me fears and what I can expect. I seem to get "white coat" syndrome when visiting the neurologist and forget all the questions I would like to ask. He is a very nice person but there is always a waiting room full of patients. My husband never speaks of what is happening. My balance and co-ordination has deteriorated and lifting my legs to walk is an effort when tired. I do use a cane in shopping malls. So learning to plan my activities and having a short rest to recharge batteries. I have an appointment with the bio kinetics department at the university shortly. I do take an anti-depressant which has helped with the dark moments and is evidently a side effect of SCA and MSA. I have now been diagnosed with the latter. I have been into the MSA site which is very informative but this site has a lovely friendship ring.