Seems after 24 years of being told my ataxia is non specific by Drs, I''ve discussed what was told by diagnosing consultant with mum and the vague discription she got was that it stems from the back of my head controlling my nerves. That was the exact responce she got! Seems through reading this would be the cerebellum so is my sumise correct that I have CA? I always wondered but my medical records vanished from the face of the earth upon moving from previous treatment area so whenever I'm asked I can only say ataxia. We were told that it's sporadic and none progressive i.e will not improve or get worse and that my body would learn to live with it.
I went through all the mri's, electric needle tests, cts blood tests only to be a sort of unknown all these years, previous GPS, Physios and OTs could not get responces fom diagnostic consultents of Surrey as my records amazingly vanished from earth with EVERY inch of informatiom. My family suspect this may have been a ploy to avoid a malpractice suit after Lumber Puncture brought symptoms to light. And prevent questions from a new GP.
For a laugh I still have an inch long indent in my bottom from the LP so .my understanding is it must've gone badly wrong as never known LP leave a dent in someones backside before lol
Any guidence would be appreciated
I'm not sure, maybe address this question to Ataxia UK.. unless someone else who knows can step in?
It was my understanding that Ataxia can be classified either as a symptom (ie balance and co-ordination problems) and often a symptom of something else ie CP, MS, Stroke etc .. or it can also be a progressive condition - most often inherited and due to a genetic defect but there can be other causes.
As far as I know the ones that progress are the ones known as Cerebellar Ataxia's as its usually a result of the cerebellum shrinking or cells dying off in there that affects its inability to send the correct messages to muscles etc. .. I could be wrong or forgotten something!
Thanks Kati, I've read the same but also saw a link today http://www.buzzle.com/articles/cerebellar-ataxia.html just going by mums explanation as well that she pointed to where consultant pointed in photos! The link does say it can be non progressive and sporadic (unknown sudden cause) wll try ataxia uk thanks again
I suspect your mum may be right - I have had three lumber punctures and the last one took three attempts to get the needle in but ... all were painless and none left a mark.
Certainly work contacting Ataxia UK for advice.
Best wishes, Patsy
Thanks for the reply too patsy you and kati been wonderful yakking to me i must be bugging already lol good job im known as a chatterbox.. I've joined ataxia uk too so shall keep an eye on both. I am lucky I don't remember the Lumber puncture but I certainly know of my as I affectionately call it butt dent!