I wish to understand this more better and make more sense of the symptoms I experience .
I was only confirmed and properly diagnosed last week - so its all still very new to me .
Am yet quite confused over it all TBH (to be honest)
Many thanks Anna29
Hi Anna29
I am so sorry to hear of your diagnosis. I am afraid my knowledge of sensory ataxia is limited but I will try my best to explain what I know.
Ataxia means lack of order. Ataxia is a symptom of other disorders, for example MS, but there are groups of disorders, for example the cerebellar ataxias and sensory ataxias where ataxia is the main symptom, but the ataxia is a result of different parts of the nervous system being affected.
I have cerebellar ataxia. The cerebellum is at the back of the brain and is an important part of the nervous system that controls balance and co-ordination of movement. In cerebellar ataxia the cerebellum is damaged and the nerves and the muscles it mediates to control balance and coordination are directly affected.
In sensory ataxia, there is no cerebellar dysfunction but the parts of the nervous system that control sensory input into the control of movement are damaged, that is nerves in the spinal cord or nerves to the extremities, for example the legs and feet. In your case I assume this damage has been caused by the rubella virus.
In people with sensory ataxia there is a loss of the sense of where different parts of the body are located to each other and to the ground, which in turn leads to a loss of muscle movement coordination. Because of this the brain depends more highly on visual information to assess body position, so unsteadiness and imbalance become more pronounced with closed eyes or in low light.
Due to the loss of sensation in the feet and legs people with sensory ataxia develop an unsteady, possibly stomping gait, with the foot striking the ground hard on each step. It may also be associated with pain in the feet and legs.
Many of the challenges of living with ataxia are similar, irrespective of the underlying cause. There are many publications on the Ataxia UK website that you may find helpful (ataxia.org.uk), in particular the 'Newly diagnosed' section which can be found at the top of the drop down menu of 'Ataxia' at the top of the homepage andand publication 'Ataxia:What is it?'' which can be found in the following link
I hope this has been helpful to you. I am sorry I can offer no personal experience of sensory ataxia. However if you have other questions and you think I may be able to help, please do not hesitate to ask.
Very best wishes
Harriet
Cool reply Harriet - so VERY helpful also .
I know so little about SA (sensory ataxia)
Anything or any info helps a lot - it really does !
Helps me to learn and understand about this .
Then I can start to self manage things with more awareness .
Your reply and comments have meant A LOT to me .
Many thanks and really appreciate them .
It is great how you can help where the HCP(health care professionals)
cant teach us 'all' the explanations of so much to learn and adapt with .
Anna29 . xxx
Hi Anna, how are you now? Did your symptons get better? I have been diagnosed the same, but cant really find out much, any info is welcomed.x
Hi Anna29
I have Sensory Ataxia, I'm now 84, and I've had it since I was 77, seven years ago.
I must say Harriet's description of it is probably the best I have read - clear, precise, and to the point (thanks Harriet).
i have difficulty in walking, avold coloured concrete (or lines painted on concrete), slopes ( steep slopes I have to go down sideways), stairs (although I can go up), I have to go down sideways, catching hold of a rail, or something, wet or damp surfaces, night time outside I use a torch, if there are no street lights , uneven surfaces, cannot go down escalators ( I have really tried to use them), I can just about go up on one, so if i am in a department store, I use their lifts. If I walk, I have pains in my left leg thigh, and back.
My left leg has a twisted feel to it, it's been like this from the start.
I attend the Neuro Hospital, Queens Sq, in London (I live in Bristol), and I see two Neuro consultants ( one who is a specialist in ENT and Eyes). I have also seen a third one just for an hour ( he confirmed what my first one had said), and a fourth one (I have not met him), but he has been looking at my DNA, at the request again of the first one I saw.
The year before last my first consultant said they had found out that I was a carrier of Friedreich's Ataxia, a lot of people by all accounts, are a carrier of something. I was told that I did not have it, and would never get it -a sheer coincidence that I have one form of Ataxia, and am carrying another.
In London I have been in the rotational room for tests, Have had a needle put in all over my legs, electric shocks in my legs, hands etc (I forget the actual names of these tests, and of course the Romberg test.
The consultants cannot understand why my S. Ataxia started so very late in life, when most people have it much earlier, or from birth, of course i think it is according to the type you have, and i know there are a lot of types.
Now to cheer you up.
I try to carry on as if I didn't have it. I am taking piano lessons once a week i go to a music society once a week in the winter months, I am a member of a musical comedy club, and go once (sometimes twice a week - I'm not on stage by the way, ha, ha). I go once a month to a meeting of an Elgar society (Edward Elgar), I go to musicals in Bristol and London. Go to exhibitions of paintings (usually in London when I'm there.
I think I am lucky for it not to have started until i was 77, and that it Sensory Ataxia, and not one of the other ones, but, I have not yet mentioned one of the worst things about S. Ataxia ( as with other types), I get very, very, fatigued, and tired.
I am interested in how old you are ? I know you should not ask a lady her age, at a guess 29, i say that because of Anna29. Oh, and i have become a volunteer driver for the charity Contact the Elderly, taking lonely old people over the age of 75 to tea parties at host's homes once a month on a Sunday.
I hoped this has helped you, and to show you it is not all doom and gloom.
If i can help you with more info - let me know.
In the meantime, best wishes, and be good. 
Doug Smith, Bristol.
Hi Doug .
Thank you very much for your reply .
Of course you can ask me my age and I will explain about the 29 in my user name too .
Right - am 53 years old started with the symptoms of ataxia at 51 years - my neuroscience consultant said with the resurfacing of the rubella virus it strikes in the 5th decade of our life (just like the polio virus) they are both an infection that can regenerate and manifest in our 5th decade .
They can manifest and cause decompensation with the ataxia late onset trigger of this condition .
This is what has happened with myself .
Now the 29 explanation for this in my user name is - there are 4 generations
in my family all born the 29th of January - " how weird is that ?"
Husbands grandfather - 29 january
Husbands mother - 29 january
Me - 29 january
Our only granddaughter - 29 january
My consultant explained I have rubella sensory ataxia very clearly late onset and fit into the NAPA spectrum range of ataxia .
Have seen this also in the ataxia handbook of various types of ataxia .
Harriets description above has really helped to explain a tad more about SA (sensory ataxia).
As I was just having confirmed diagnosis thrown at me by the neurosciences
and 'little' was really explained .
Baffling and confusing for myself !
It is all now a real learning curve for me ...
Loads to learn , understand, take on board and remember / also fit the
signs and symptoms to what I actually am physically experiencing !
Wonky walking , speech , balance , writing/spelling ? co-ordination , cognitive
memory , tiredness .
I sway when walking and can stumble if not look downwards whilst walking.
Am battling off the need for a crutch or stick etc as long as I can do .
Legs and feet ache a lot after being mobile on them .
I handle stairs and steps sideways too .
Avoid all escalators - simply cant do these at all anymore .
Been finding ways around all of this lately .
Have both the mito chondrial and thyroid disease also .
Put my tiredness down to just them previously .
My dry stiffy feeling eyes have been a problem too .
Tiny limbs and muscles could be down to the rubella ?
As I am with really teeny tiny limbs with little muscles and am muscle and tissue wasting away .
If it wasn't for all your replies and truly helpful explanations I would not be able to learn about SA (sensory ataxia)
This is so helpful getting to know more vital information or understand more about it all .
Many many many thanks to you all . Anna29 . xxx
Is this why I have to respell or resay my words too ?
My words do get scrambled up when say or spelling them .
this is most interesting. I am 76 and have had trouble since 2011 after a flu bug when I realised I could not feel my legs and feet, had problems walking down slopes- could not control my legs so started galloping down . have had swallowing problems for 15 years which they reckon is due to CA. am interested to hear that you are still driving- I told DVLA I have CA and they are still deciding whether I should still have a licence. I live on my own now as my partner of 21 years left me as I was too old and too disabled- what a pain but at least I do not have to cope with him any more- he had severe depression.your life is a reminder that we still have choices how we live our lives. Good to hear from you all the best Sylvia
Dear Anna, HarryB's descriptions/information were fantastic...,thank you! I have cerebellar ataxia (not sensory ataxia) also, although I have some difficulty with my preoception, for instance I can't go down or up escallators and don't like stairs or slopes, etc., unless there's something to hold onto. Hugs..., ;o)
Hi - like you I avoid all escalators steepish stairs,steps,ramps
Much prefer gentle slopes/ramps/steps/stairs with a hand rail .
I also prefer my husband or a person arm to hold onto
on my right hand side is best I have found .
The SA is left side weakness is much more pronounced too .
The SA (sensory ataxia) explanation from HarryB - was brilliant I agree .
Great info to learn and understand it better ...
I have Ataxia 
Ataxia 
Ataxia and eyesight
