Hi everyone, this is Saff here. I'm the one with Acute Cerebellar Ataxia besides being affected by Spinal Atrophy type 4. In my condition, I believe, the mind plays an active part in letting you feel awfully unwell, or otherwise. I've stopped thinking about the several phases of Nystagmus etc. that hit me and as a result muster the ability to counter them, or at least lessen their harshness, on my heart, at least. And, I'm going on as well as I possibly could: doing just about all that I care for. May Allah Grant all of you to contend successfully with your separate conditions and may I be allowed a happy demise InshaAllah
HI Jane and welcome to our small nook heree ... sorry to here of your grand mother and mother have contended with Ataxia.
With them bothh having it it does sound like it likely is hereditary form
I know when I had some genetic profiles doone,, years ago) it was costly. Lucky my insurance picked up the bill. Since then in 2003 I know they have identified more genetic markers, how many more I don't know.
Have you mom and grandmom had testing? Depending on the type doctors and genetisists would maybe determine how it is passed (dominant or recessive?)
Have you displayed any symptoms?
If having testing done is what you would want to persue, you will need to have a neuro specialist refer the blood work. Since it sounds they have not labeled the specific one, they could eithher run the whole panel,, or maybe narrow it down through symptoms, age of onset, etc. On the other hand sometimes the full panel would not determine the gene as they have not identified all of them.
DO you know whhat ages your mom and g.mom were at onset?
you know,, IF you did have SCA, there is no treatment and unfortunately nothing to stop it. I understand wanting to know and be educated. Keeping active , safe is important.
These diseases can be very hard to figure out.
But my first suggestion would to start with your primary doctor and have some good conversation with him.her.
I hope you are not stressing.
Have a good day and be in touch . I know this forum is slow since ther are not so many of us with Ataxia to begin with, but I try to maKe sure I read often . Amo
My mum has cerebeller Ataxia and they say its genetic cause her mum had it so I could have this to and I'm 24 and want to know, so is there a test?
I guess I aam a liittle confused. Your note said you have the ACA (acute Cerebellar Ataxia) from a TBI (tramatic Brain Injury) I am confused that would continue too have a degenerative process.
Even with ACA from a virus, I woulld have thought the process would stop once the illness passed.
What have your doctors actually told you about your personal prognosis?
Many many people with Ataxia can still be rather self suficiannt through their life. You can ask your doctor to write a script for Physical/Occupational Therapy to keep you as safe and independant as you can.
Ataxia is very difficult to treat, if not impossible, just a very stubborn area of the brain.
Hope you h ave a good day, and be safe! Amo
Thanks for the info. on Spinal Muscular Atrophy not being fatal, it is pretty relentless though, well, that's just as good isn't it, as being terminal? For Acute Cerebellar Ataxia I've researched it to be about 35-40 years post trauma. That gives me around nine to fourteen more years, since it's already 26 years post trauma. Can the debilitating affects of Acute Cerebellar Ataxia be lessened or removed. I'd hate to get more and more dependant on my husband for essentials, since Acute Cerebellar Ataxia is said to be degenerative?
Hope you are doing well.
Remember we are not doctors here on the sight, just patient to patient giving support.
Since I personally am unfamiliar with Spinal Muscular Atropy-4 I did look it up. If i read it correct the form is not exppected to shorten a persons life. I would advise you to talk wiith your doctor since they would be familiar wiith your history.
Take care , Amo