Ataxia UK
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Ataxia what?

I've had symptoms for a year or more with the last 4 months getting worse rapidly. Not definitively diagnosed yet, gait issues, I've fallen 4 times in 3 months. I'm short so I don't have far to fall-haha it's like I start to lean and i can't catch myself. It's more like tipping. Neurologist gave me Rx carbo/levin it's given to patients with Parkinson's to help with balance- a low dosage didn't help after a month so she just doubled my dose- it's only been 4 days-cant tell yet- I'm 56 yo,female-Asian American- adopted, so known family history. 2 MRIs 2 sets lab work EMG all negative. I think it's cerebellum ataxia, can it get better? I've read about some other meds. I've had 4-6 good days mixed in -never 2 in a row, why and isn't that a good thing?


3 Replies

Dear 11-11, Ataxia is very challenging and frustrating! I was diagnosed eleven years ago with Sporadic Cerebellar Ataxia (unknown cause/symptoms 24/7). I'm 61 years young. Up until nine years ago, I worked full-time as a social woker (28 years), but finally had to retire due to my symptoms progressing. About five years ago I started using a cane when I leave my home as I fell, severly injuring my back. Graduated to a quad-cane about two years ago for more stability. I've taken some falls (never while using my cane) where I've hurt myself in some way. Falling is NOT my idea of a good time...,ha! Anyway, I've had 3 MRI'S in eleven years, the first showing atrophy of my cerebellum, with the second and third showing a bit more progression. When I was diagnosed, all my blood work and EMG were negative for a cause also! I live in the USA and the "Living With Ataxia" site is helpful, as well as "The National Ataxia Foundation" (NAF). I have stretches of a few days where things seem a bit better also, although I ALWAYS have symptoms. Due to the fact you were adopted you, if feasable, may want to consider genetic testing for the known dominent and recessive types of ataxia, although your neurologist would be the best source to advise you! Years ago I had genetic testing for the known recessive types of ataxia, which was negative. I may eventually have genetic "genome" testing for the known dominent types of ataxia, because I have two grown children and three young grandchildren. I currently take no medication, as a couple I tried (for tight muscles) caused adverse side-effects. My best to you...,;o)


I have had cellebare ataxia for the last 10+years ,I cannot be precise as this is unknown,ataxia is a slow and progressive desease with no known cure as yet! it is nueroglogical which affects your speech and balance,i am now 61 and my balance has gone to pot this is not helpful to me as I have ruehmatiod arthrist as well, so very good luck with getting dianogised x


it has taken the docs 4 years to decide I have cerebellar ataxia. It is hard to cope with as you are so limited in what you can do. you need to plan ahead- how you will do your shopping etc. I now have a very good lightweight walking aid which has given me the confidence to walk about outside on my own but I am very slow. My family are very supportive but I live alone after my partner of 21 years left me as he could not cope with me being disabled. you just hope for the best and if you have a bad day just hope that tomorrow will be better. just keep going !!


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