glad to see you post here.
Can I ask , have you or some one been ill and hav e ataxia?
if you wanntt to explain more that would bee helpful.
Do keep in mmine, the forum here is not a dr forum, patients supporting eachother.
I'm not so familiar with the acute type brough on by illness or injury.
I did a little search and did not see anything where from the acute ataxia itself would short ones life span. Maybe if the underlying cause for the ataxia has reason to sshorten the life it would.
What hhas your doctor said about it?
Many of the herediatry types even do not shorten life span.
Complications like choking or falls could make a higher riisk of doing so.
I hope this helped at all and hear from you again.
Tak e care, amo
I have some form of Cerebellar Ataxia. Its not fully diagnosed yet but its suspected its hereditary. I've only experienced symptoms which effect me for about 4 years now (I'm 24). My Doctor is still trying to come up with a way/treatment to help me, I've had loads of tests! Have you had an ECG? This was one of the first tests I had (it came back normal :)).As yours was brought on by the flu I don't see why it should shorten your life span., I certainly don't consider mine to be shortened!
My own cerebellar ataxia has been with me for the past 26 years. It's shown no signs of abatement, though I have gradually grown accustomed to living with it, with help, ofcourse.
Hi Saff and welcome t o the Ataxia Froum,
It always is a bummer to need to welcome a new poster, but glad you have .
I understand the learninng to live with all that comes with Ataxia! Sometimes I have to stop myself and realiize how adapting we are.
when I f irstt saw my 'dizzy' doctor and she told me it will not get better I thought surely she was wronng because I was young strong and healthy! LOL Little did I know back then.
The dizziiness alone can be gruesome, right?
Do you know what type of Ataxia you have?
It sounds like you have a good support system.
I had been through alot of the gene tests manyy years ago, but they came back negative. Since there aare many more identified I entertain the thouught of maybe having the newer ones done.
I hope you are feeling ;well; today and feel free to post again, we like to hear from you.
I have Acute Cerebellar Ataxia that came with Severe, Diffuse Traumatic Brain Injury resulting in 3 months of complete coma.
...............while I live and have my senses about myself, I might as well try to live as full a life as i possibly can and I do indeed have the best family around mashaAllah(Thank God.) May I be able to spend my time on earth as a capable, cognizant and kind Muslim, InshaAllah(God Willing)
Welcome to the forum.
I'm sorryy to know you have this challenging illness. I alwayys say iit is not for the faint of heart because a person has to be tough to deal with it.
If you care to tell your story, that is what we are here for, support!
I imagine those around you were very worried and scared while you were so ill,
I personally do not know anyone who's Cerebellar Ataxia is cause of TBI. I aminterested what doctor say of recovery for you.
I hope this is a good day for you, Amo
Today, like all other days is good for me, since it brings me a day closer to the end of this daily struggle called life. My form of ataxia, i.e. acute cerebellar ataxia has been diagnosed to be degenerative(it's supposed to get worse overtime) however, Alhamdolillah I still walk and talk fine, for myself at least, am engaged to be married shortly, and most importantly: has rebuffed physicians time and again as regards my potential and actions. May God Bless all my family for their kindness, perseverance and continued support: I could NEVER have been where I am today, without Allah's Blessings.
I have acute cerebellum ataxia, when i found out i was in elementary school, one day i went to the restroom and didnt come back when the teacher noticed she came and got me, i fell and hit my head on the sink( i only remember my mom and dad coming to get me) mom and dad took me to the hopital, doctor ran test after test and came up with nothing i had to stay overnight because they had to call a specialist. In the end they took a spinal tap and cured my 95% and that was all they could do.
now i still have spells but randomly an i am now 28.
I am happy you found the forum here.
You see it is rather sloow forum, but caring none the less.
That must have been scarey for sure being little like that. Have they ever but a name to your Ataxia other than 'just' acute?
I wonder if it is from an illness?
And it sounds like you have remaining damage.
If you would like you can post to this thread, or you can alway begin a new.
I hope you are doing 'well' . Have a good day and look forward to more posts. Amo
Cebellar Ataxia - is not caused by the flu. It is genetic and very rarely can be caused by alcoholism, but super rare for that. It is not well-studied or researched. Most testing will come back with absolutely nothing wrong with you.
My mom passed away from this, she also had Epilepsy from age 9 and on. Her hearing got really bad, then she woke up one day totally deaf, passed away about 12 years after that at the age of 61.
There is no cure, no real treatment, and most doctors, at least in the US, have no idea what they are dealing with. All tests will come back as "normal", except maybe an MRI.
I have suddenly lost my hearing, 60% in the worse ear, and have been seeing many Neurologists who have no clue what they are talking about. One told me that my hearing loss was caused by sleep apnea, what a quack!
Good luck to everyone with this terrible disease. I started getting bad at age 40 and even tho I see many so-called specialists, because the tests come back "normal", they don't know what to do with me. I have found one single Ataxia specialist in Detroit who is running me thru testing, the others give me the spin-off. He even sent my blood out to the Mayo Clinic.
You cant get ataxia from the flu..