# Ataxia
**URL:** https://forum.livingwithataxia.org/t/ataxia/3020
**Category:** News, Research, and Clinical Trials
**Created:** [February 16, 2016, 1:14pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020 "2016-02-16T13:14:48Z")
**Posts on this page:** 20
**Page:** 1
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 16, 2016, 1:14pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/1 "2016-02-16T13:14:48Z")
I was looking for something else when I came across this information and I thought it was useful and easy to understand 🙂
Log onto [http://parkinsons.nm.org/ataxia.html](http://parkinsons.nm.org/ataxia.html)
Basically it’s a concise introduction to Ataxia signs and symptoms. Other symptoms that some forms of Ataxia are associated with. Conditions that might cause Ataxia. Which diagnostic tests are done. Available treatments. Advice that medications can relieve certain symptoms.
There’s a link to Clinical Trials.
---
### Author:  [@sunny8088](https://forum.livingwithataxia.org/u/sunny8088)
#### Post date: [February 16, 2016, 2:03pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/2 "2016-02-16T14:03:26Z")
Good info.
---
### Author:  [@Alan\_T](https://forum.livingwithataxia.org/u/Alan_T)
#### Post date: [February 16, 2016, 7:44pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/3 "2016-02-16T19:44:14Z")
Thanks for sharing
Its amazing how many instances of ATAXIA , are mentioned the symptoms overlap is so much more than alot of patients are led to believe......
(this non- sharing of information, to patients is something that makes me angry !)
---
### Author:  [@access](https://forum.livingwithataxia.org/u/access)
#### Post date: [February 17, 2016, 1:24pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/4 "2016-02-17T13:24:05Z")
I really love seeing the actual definition of SPINOCEREBELLAR ataxia -- it is a very distinct type of ataxia and should only be used by those who have a DOMINANT and HEREDITARY type, proven by medical testing. It's too bad that doctors throw around the SCA diagnosis so much -- they shouldn't.
---
### Author:  [@sunny8088](https://forum.livingwithataxia.org/u/sunny8088)
#### Post date: [February 17, 2016, 1:40pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/5 "2016-02-17T13:40:31Z")
True Access, I have SCA3 and was determined by Genetic Blood Testing
---
### Author:  [@access](https://forum.livingwithataxia.org/u/access)
#### Post date: [February 17, 2016, 8:49pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/6 "2016-02-17T20:49:54Z")
I think a lot of folks who have ataxic symptoms are automatically given the diagnosis of spinocerebellar ataxia by a doc or they self-diagnose via the internet info that they read-- but that shouldn't be so. Family history is a huge component -- and docs should take the time to explain dominant vs. recessive vs. sporadic/idiopathic. Unfortunately, the diagnostic journey may just be starting...trying to pinpoint one's reason for having ataxia symptoms is a huge task and can take several years and rounds of tests -- it's basically the process of elimination, for some.
I think that in the beginning of one's journey, the patient should call their medical condition something simple, like "a neurological disorder with ataxia symptoms." I know that's a mouthful, but it's more accurate than saying "SCA" when the patient doesn't have family history/test results.
-just a thought...I've gone through all of this firsthand, and it's so exhausting and frustrating.
---
### Author:  [@sunny8088](https://forum.livingwithataxia.org/u/sunny8088)
#### Post date: [February 17, 2016, 8:55pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/7 "2016-02-17T20:55:15Z")
Agreed , but even after finding what we have , there is no cure , so end result will be same
---
### Author:  [@access](https://forum.livingwithataxia.org/u/access)
#### Post date: [February 17, 2016, 10:41pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/8 "2016-02-17T22:41:42Z")
Yes, sad but true....Nonetheless, hang in there and stay active.
---
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 18, 2016, 9:13am UTC](https://forum.livingwithataxia.org/t/ataxia/3020/9 "2016-02-18T09:13:04Z")
It took me a good 20yrs to eventually get diagnosed. It was a very stressful and frustrating journey.
The Neurologist who actually gave me the diagnosis of Idiopathic SCA, specialised in MS. I received this diagnosis after symptoms and an MRI were taken into account.
He then referred me to another Neurologist, an expert in Ataxia, who confirmed the findings.
I’ve since found out that the Ataxia is genetic. But only because I donated DNA, and due to a recent discovery.
My Ataxia is passed on by carriers of a mutant gene, it’s known as Recessive. The carriers are unaffected, it takes two carriers to come together ( my parents) for their offspring to potentially show symptoms of Ataxia.
So, given that there are so many identified types, various causes and recessive triggers, it’s hardly surprising diagnosis is tricky. Over 90 types have been identified already.
But, as has been said, there is a big difference between Ataxia (basic problems with balance) and Spinocerebellar Ataxia ( a progressive degenerative Neurological disease). On here, we tend mostly to just refer to Ataxia. But, it’s a given that we actually mean Spinocerebellar Ataxia. 🙂 xB
---
### Author:  [@access](https://forum.livingwithataxia.org/u/access)
#### Post date: [February 18, 2016, 1:48pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/10 "2016-02-18T13:48:43Z")
Thank you for sharing, Beryl. But your case is precisely about which I'm talking -- that is, a recessive type is not a SPINOCEREBELLAR type. Only **dominant** hereditary cases are given the pre-word spinocerebellar, as I understand. ???? For example, are Friedreich's Ataxia and AOA1 also known as being spinocerebellar Ataxias? I wonder...
---
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 18, 2016, 2:34pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/11 "2016-02-18T14:34:55Z")
I googled ‘is a recessive ataxia known as Spinocerebellar’ and clicked on the first link which was Wikipedia. I think it answers your question 🙂 xB
access said:
> Thank you for sharing, Beryl. But your case is precisely about which I’m talking – that is, a recessive type is not a SPINOCEREBELLAR type. Only **dominant** hereditary cases are given the pre-word spinocerebellar, as I understand. ??? For example, are Friedreich’s Ataxia and AOA1 also known as being spinocerebellar Ataxias? I wonder…
---
### Author:  [@access](https://forum.livingwithataxia.org/u/access)
#### Post date: [February 18, 2016, 2:39pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/12 "2016-02-18T14:39:19Z")
Hmmmm, with all due respect, I feel that Wikipedia is not a good source (as does our school district). With that being said, here is a link that is heavily relied upon in the USA re: classification of ataxias: [http://neuromuscular.wustl.edu/ataxia/aindex.html](http://neuromuscular.wustl.edu/ataxia/aindex.html)
Obviously, my questions and thoughts are outnumbered here -- and so I'll bail out...Thank you for your time and consideration -- and especially for pointing out that classification issues are problematic in other countries, too. Have a good day.
---
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 18, 2016, 3:02pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/13 "2016-02-18T15:02:57Z")
It’s good to have a discussion going 🙂 If anyone would like to read about my diagnosis, Google SYNE1 SCAR8.
One of my cousins had Muscular Dystrophy. Unfortunately I don’t know which kind, which is a shame because one type is mentioned.
My paternal grandmother passed on the gene for Muscular Dystrophy, I’m wondering if my SCA is a result of her being a carrier for this too 🙂 xB
access said:
> Hmmmm, with all due respect, I feel that Wikipedia is not a good source (as does our school district). With that being said, here is a link that is heavily relied upon in the USA re: classification of ataxias: [http://neuromuscular.wustl.edu/ataxia/aindex.html](http://neuromuscular.wustl.edu/ataxia/aindex.html)
>
> Obviously, my questions and thoughts are outnumbered here -- and so I'll bail out...Thank you for your time and consideration -- and especially for pointing out that classification issues are problematic in other countries, too. Have a good day.
---
### Author:  [@Geri](https://forum.livingwithataxia.org/u/Geri)
#### Post date: [February 6, 2017, 1:42pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/14 "2017-02-06T13:42:53Z")
Hi Beryl. This is a very interesting article. My original diagnosis is Chiari Malformation. The Tsymptoms started after my last two surgeries is September 2015. This is been an interesting learning experience for me. Thanks for sharing this information.
---
### Author:  [@Linda4](https://forum.livingwithataxia.org/u/Linda4)
#### Post date: [February 6, 2017, 3:49pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/15 "2017-02-06T15:49:43Z")
This has been very interesting. I have no doubt about where my ataxia came from. It was the surgery remove my Brain Tumor from the fourth ventricle. The fourth ventricle is right next to the cerebellum. I didn’t have any ataxia symptoms before then but I certainly had them afterwards.
---
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 6, 2017, 4:35pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/16 "2017-02-06T16:35:10Z")
Hi Ladies🙂 Initially, I was told that my MRI showed twisted arteries putting pressure on the Cerebellum, and the resulting atrophy was the cause of my symptoms. That opinion was given 15yrs before DNA testing showed a link to the mutant gene Syne1🤔
I’m sceptical about this finding. My Mother had experienced similar symptoms to me, and one of her brothers has a granddaughter who has Apraxia. This makes me to wonder if my ataxia is actually Recessive​:thinking: Although it is difficult to question DNA findings 🙂xB
---
### Author:  [@Linda4](https://forum.livingwithataxia.org/u/Linda4)
#### Post date: [February 6, 2017, 8:20pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/17 "2017-02-06T20:20:58Z")
I did some more reading (since I have lots of time since I can’t do much else and I like to learn about stuff). Anyway, I concluded that some types are dominant and some recessive. So I think everyone is right! I didn’t try to figure out which types are which.
---
### Author:  [@Beryl\_Park](https://forum.livingwithataxia.org/u/Beryl_Park)
#### Post date: [February 7, 2017, 9:05am UTC](https://forum.livingwithataxia.org/t/ataxia/3020/18 "2017-02-07T09:05:00Z")
You might find this site interesting Linda🙂
[www.ataxiacenter.umn.edu](http://www.ataxiacenter.umn.edu)
🙂xB
---
### Author:  [@Geri](https://forum.livingwithataxia.org/u/Geri)
#### Post date: [February 7, 2017, 1:23pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/19 "2017-02-07T13:23:13Z")
Thank you, Beryl. I just gave myself some more homework. 😊
---
### Author:  [@Linda4](https://forum.livingwithataxia.org/u/Linda4)
#### Post date: [February 7, 2017, 11:26pm UTC](https://forum.livingwithataxia.org/t/ataxia/3020/20 "2017-02-07T23:26:17Z")
Beryl,
Very interesting. Thanks. I will keep this in mind, though what I really want to do is use the PoNS device that is in clinical trials now. I will keep looking at what is going on in Minnesota, though.
Linda