Why or how does ataxia tire me ?

[Anna29]

Hello .

I was born with congenital rubella .

Only just recently been diagnosed with rubella motor ataxia .

Last month only in April slight ataxia was mentioned .

My whole left side is affected plus my face and eye muscles has

gone droopy on the left side .

Even hold left eye lid up - when watch tv .

Leg (left one) and my feet are painfully affected .

Totter walk , bit wide steppy and have to always look downwards when I walk .

Am stunned at how tired I get after doing the simplest of things !

My limbs are tiny with extreme muscle wastage so it is harder to

use the little muscles I have left .

A real catch 22 thing is going on .

Just recently been in hospital and they are struggling trying to find

a rubella medical expert within the UK .

I live in the north west of UK and am aged 53 .

Started with the ataxia symptoms 2 years ago .

Didn't know - what was causing them either .

Am frustrated and confused how this can tire me out so easily ?

Would love to know and meet any others with history of rubella and ataxia ?

Help ?

[february]

Dear Anna29, I do not have rubella, but do have ataxia. I am sorry you have this to deal with! My theory is, we get so tired as we have to really use our muscles just to hold ourselves up and do anything at all. It takes more energy, hence the tiredness! My muscles are always so tight and stiff. If you have muscle wasting, it's even MORE tiring for you! I hope you hear from others with rubella and ataxia! My best to you..., ;o)

[Anna29 in reply to february]

Thank you for this reply @febuary it meant a lot .

I am now self discovering just exactly what you mean !

Am tired easily with using my little limbs and wary of the future .

Muscles will waste away even 'more' leaving me with less muscle

than I have now .

Quite a scary thought I find .

I do try to keep going to prevent my muscles getting too stiff

and sore .

Is this the right attitude ? to have ?

Though everytime when I sit down to rest my legs I zonk out .

It is early days - I have much to learn and discover perhaps ?

Was only diagnosed end of april this year 2015 .

My eyes have been worse today - thanks to the higher pollen around .

Red and swollen plus gritty every 5 minutes .

If it isn't one thing - its another - duh !!!

[february]

Hi Again Anna, Yes, my neurologist has always told me to use it or lose it. Therefore, I try to stay as active as possible, although I'm not dealing with rubella like you are. You must rest to have any energy at all, so I wouldn't feel bad about that! I just have ataxia and rest frequently too! For instance, I'll do something and then rest a bit, etc. I was diagnosed with my ataxia eleven years ago, and it has progressed over the years (symptoms have gotten worse). Therefore, I try to exercise for strength and balance. I hope you find an expert doctor in the UK for your rubella! I live in the US, in the State of Michigan. Hugs..., ;o)

[babygirl123]

Hi anna29,

I dont have all that problems that you have but I have Ataxia.

I have been diagnosed with progressive cerebellar ataxia of unknown cause for nearly two years now. Im 47.

My symptoms are still mild just now but will get worse over time. I am very unsteady when I walk but don't use a stick, Something I'm going to need to use sooner rather than later, putting off using one for as long as possible. I cant walk to far without feeling tired my legs get stiff and heavy which slows me down.

I get tired a lot, even when I don't do much, I do have an afternoon sleep when I can. I have a few falls indoors more, but outside as well,

something I will have to get use to. Nothing more serious than being battered and bruised afterwards.

Take care

Marion

[cobrien24 in reply to babygirl123]

hi babygirl 123 this sounds so much like me been newly diagnosed with cerebellar ataxia am 38years old and coming to terms with the symptons that this condition brings.....frustrated and scared x

[neta]

Anna29

Hi. I am pretty much where "Marion" is and do not have the rubella component. Still,, I wish you all the best. Neta

[joannabecca]

Dear Anna, I had rubella when I was 12 years old. I developed encephalities. Here in the USA that was supposed to be an automatic sentence to an institution. But my Mom and Dad would have nothing of that. I developed epilepsy from this. I have also dealt with ataxia although much milder than yours. Now that I am 70 years old my doctors are simply unfamiliar with rubella before we had vaccines. It is amazing how many stereotypes there are about my disabilities here in the USA. I took this as a challenge and started a center to help persons with ataxia similar to yours and to mine. I will be teaching how to use music to help some of your struggles. I am new to this page so I do not know if I can mention the center I just started or not. I will be getting my tax-exempt status in the USA in about 4 months. Anyway Let me know Anna if you would be interest in how I use music for rubella related ataxia and I will sure share what I do. Basically, I use music rhythm to help me coordinate my muscle movements. I also use playing the piano to help me with spatial issues like not being able to put a fork to my mouth when eating. Anyway I will share more later---but sure will be thinking about you Anna 29 and the rest of you. _I just now saw your post was 3 years ago. Have a great day