My smptoms are not as bad as all the people i have spoken too. starting to have doubts about a correct diagnosis. My diagnosis was 2 an a bit years ago an im able to walk though not well but without aids.
Alex,
I do not know what you mean by "2 an a bit". There are several types of ataxia, and each one of them has several varieties that are usually termed type 1, type 2, and so forth. To help answering your unsaid question we need more information.
I know what you mean Alex..It was after about four years before I needed a cane just to stop people thinking I was drunk..
I now use a walker/rollator all the time.."correct diagnosis" ???? not sure if there is such a thing! But I do hope that just maybe
you're ok and stay close to this wonderful forum..Ozzy
Hello Alex,
Ataxia comes in various forms and degrees. I'm 41, have had ataxia probably from a young age, was diagnosed a couple of years ago by one of Holland's neurologists specializing in ataxia (MRI showing clear atrophy of the cerebellum and genetic testing revealing a mutation on the same locus as SCA14). I can still walk well. People who see me don't think there's anything wrong with me. I walk, run, ride (horse). But I can't walk with both feet in front of each other in a line, my handwriting is atrocious, and you don't want to have me carry a full cup and saucer or a plate of soup into a room f.i. And when I get tired or stressed, my speech gets blurred. I get tired easily.
I do have ataxia, but fortunately it's a very slowly progressing one. Hope the same is true for you. Have you had an MRI or genetic testing done?
All the best,
Cristel
Alex sounds similar how I started. Don’t know if you drink or not I was told it proberly a factor in my case.as cristel says go for MRI.
I also would call my symptoms mild and it’s been a little over 2 years since my diagnosis. I am an sca6 which I got from my DNA test results.
I don’t use any walking aids and I try to stay as active as possible going to the gym as often as I can.
I feel fortunate that my symptoms are as mild as they are, realizing that this is a progressive condition and making the most out of it for now.
It sounds similar to me. I was diagnosed over 5 years ago - but, according to my parents I was a clumsy kid (I'm now 43) - I can still walk without assistive devices, although I use my cane when I am on transit (bus, plane, ...). My speech is slurred if I talk fast or get tired - otherwise I think it would be hard to tell something was wrong. I'm hoping that it moves no faster than this!
I have SCA2 and within my family the range of severity varies greatly. I am 61 and walk without aid unless I'm going more than a mile. My 2nd cousin was born with ataxia, she never learned to walk and passed away when she was 14 mos. Genetic testing proved we had the same thing. So even within a family there is great variation.
Hi Alex 
You haven’t said whether or not you’ve had an MRI, have you?
Sometimes but not always, this shows Cerebellar Atrophy. Making the diagnosis
of SCA correct, but this cannot tell you what type you have, or what caused it.
Mine is Idiopathic and considered mild. However, I would defy anybody to change
places with me for a day, and then consider how much impact it has on life in
general.
It took me 20 yrs to get a diagnosis and that was after 2 MRIs, both actually showed
Cerebellar Atrophy, were 10yrs apart but hadn’t been identified correctly the first time.
I know you live here in the UK, if you haven’t already done so, why don’t you ask to
be referred to a Specialist Ataxia Centre, you are entitled to do this but referral must
be via a GP.
Best wishes xB
yes ive had a mri, it was looked at by a consultant neurologist who is pretty sure of my cerebellar atrophy. Thats the limmit of his expertise and your right, ill have to fet my gp to refur me to a specialist clinic.
Ity cant have been fun taking 20 years for a diagnosis, what were you doing alll that time? where you working?
Alex Downes said:
yes ive had a mri, it was looked at by a consultant neurologist who is pretty sure of my cerebellar atrophy. Thats the limmit of his expertise and your right, ill have to fet my gp to refur me to a specialist clinic.
Has anyone else got severe memory issues?
the fact i have maybe the fact i was an alcoholic and abused substances (thats all in the past since my mri scan) might have alot to do with memory.
Dear Alex, I was diagnosed with my ataxia eleven years ago (at age 49), although I had very small symptoms starting about eight years before diagnosis. I continued to work as a social worker for three years after I was diagnosed. My ataxia affects my gait/balance. dexterity, speech, swallowing and vision No one in my family, as far back as we know, has/had ataxia, except me. I was diagnosed with an MRI (showed atrophy of my cerebellum), blood tests, a nerve/muscle test, as well as visual tests. Through the process of elimination (a team of neurologists looked for brain tumor, stroke, myothenia gravis, MS, etc.), I was finally diagnosed with ataxia (unknown cause). Over the years my ataxia has progressed, as I didn't start using a cane until about four years ago, as I took a bad fall, hurting my back. I only use my cane when I leave my home, as I'm still able to walk, carefully, in my home without it. I use a rollator for pleasure walking. I exercise for strength and balance, as well as eat as healthy as possible. Doing these things has helped me! My best to you..., ;o)
Hi Alex
My problems started around 1985. A few de ja vu incidents, mostly after getting
out of bed in the morning, then loss of balance when exercising, then a seizure
in my sleep. My husband thought I was having a stroke and I woke up in hospital.
It was thought that I had Epilepsy, testing failed to provoke a seizure but that was
what I was ‘labelled’ with. I was compelled to take medication because I needed
to drive, several different types were tried but none of them stopped the de Ja vu
incidents, I’ve never had another seizure and have been off medication for about
10yrs.
I gradually tailed off working, luckily it was in the family business. By the mid 1990s
I realized my lack of concentration and mental focus weren’t an asset to the business.
A few years later it became apparent to me that something serious was amiss, balance
irregularities and eye problems were a regular thing. But, despite still seeing a Neurologist
for checkups re the supposed Epilepsy, no-one picked up on what was the real problem,
SCA.
I had an MRI in 2000 to determine if my eye problems were related to my Mothers aneurism.
No aneurism was found but there was pressure visible on the Cerebellum. The Neurologist
at that time said they could do nothing, I would just have to live with it. No diagnosis of what
the findings actually confirmed, SCA.
So, I spent the next years, up till 2011, going back and forth to my GP trying to get a answer to
the debilitating symptoms. It got to the point where I almost felt I was losing my mind. The GP
was running out of patience.
Finally I started having falls. This led to another MRI and a definite diagnosis of SCA, by a
different Neurologist.
Most of us here have similar journeys to tell, it’s so difficult to diagnose this condition, there
are so many variables, it can mimic other conditions. If it’s genetic usually diagnosis can
be pinpointed quicker but otherwise it can be very frustrating and lengthy.
Anyway, persevere and get referred xB
and eye problems
They say, mine is mild, also, but I can't even imagine it being extreme...Good wishes to you..:)
I am diagnosed with idiopathic cerebellar ataxia in July 2014, I have a “shopping trolley” walk but walk unaided, afternoons voice gets slurred and sounds drunk. I worked as a social worker until I lost my job due to ill health, falling down and choking at work, a colleague did the hicks manoeuvre once as they were concerned. I have been in denial for years and still am at times. I feel like a trained poodle at times as every neurologist repeats the same tests. I am unable to work according to my GP and have applied for work related pension but so far this has not been recommended by occupational health as I am not permanently disabled but it depends on what my neurologist says in December 2014. I have no doubt about my diagnosis,even though it is considered mild, but progression is not clear right now. Oh yes, my handwriting is so bad, even I struggle to read it and sometimes can’t. I have had memory problems, couldn’t read a book, but As I started to read children’s books, I can now read low level books. So even more for me to deny about my health. Any ideas from people??
Have you had an MRI of your brain, Sarah? I ask because I was diagnosed with Sporadic Cerebellar Ataxia (idiopathic/unknown cause) eleven years ago, although I had very minor symptom starting about eight years before diagnosis. It effects my gait/balance, dexterity, speech, swallowing and vision 24/7. I've had three MRI"S (one at diagnosis and again, every five years). There is atrophy of my cerebellum, a bit more with each MRI, as my ataxia has progressed (gotten worse) over the years. For instance, up until four years ago I could walk unaided. But after a bad fall in which I hurt my back, I started using a cane whenever I leave my home. Two years ago I started using a rollator for pleasure walks. I worked, like you, as a social worker up until eight years ago. I finally retired due to my ataxia symptoms worsening. ;o)
I too, have mild ataxia. I have had it all my life. Imagine being a child and wondering why you’re clumsy, can’t whistle like the other kids, can’t carry a glass of water or cup of coffee without spilling, etc. And waiting until 2007 to find out the answer. I am 65 years old now, and sometimes use a cane for balance, and a doctor showed me the muscles under the throat to speed-up the tongue so I don’t slur my speech. I have learned to adjust to the falling and the balance problems. Also, when I get tired, I stumble when I walk, and my handwriting gets worse. My neurologist has told me that my ataxia is very slow progressing. Thank you, Jesus!
Get an MRI and that will tell you what kind of ataxia you have. I hope it is slow progressing, too.
Still dancing said:
Get an MRI and that will tell you what kind of ataxia you have. I hope it is slow progressing, too.
Your story sounds very familiar, but the MRI doesn't tell you everything: my atrophy is quite clear but my symptoms are very mild. According to the neurologist I go to, the severity of the atrophy doesn't always correlate with the severity of the ataxia.
He also said that progression in hereditary ataxia won't all of a sudden go faster, so since I've had mild symptoms since I was a child, I'm extremely lucky to have a slowly progressing ataxia. Sometimes it may seem it's going faster, but he explained that it feels that way because you're hitting a certain point where you can't do something anymore.
Cristel Aarts said:
Still dancing said:
Get an MRI and that will tell you what kind of ataxia you have. I hope it is slow progressing, too.Your story sounds very familiar, but the MRI doesn't tell you everything: my atrophy is quite clear but my symptoms are very mild. According to the neurologist I go to, the severity of the atrophy doesn't always correlate with the severity of the ataxia.
He also said that progression in hereditary ataxia won't all of a sudden go faster, so since I've had mild symptoms since I was a child, I'm extremely lucky to have a slowly progressing ataxia. Sometimes it may seem it's going faster, but he explained that it feels that way because you're hitting a certain point where you can't do something anymore.
This question, is to Anthony Perkins, and to all. I was diagnosed with SCA 5, around a year ago. My Neurologist said it was hereditary and not due to drinking. which was first thought. I mentioned that I do drink, and have a past of drinking aswell. I was told or instructed it wasn't a good idea to drink any further, but it would possibly not effect the progression of my condition. I'm now 45, and was told that I have actually had Ataxia for about 10 years +. What I can't, come to terms with or understand. If my condition, is already said to be progressive. Why is the drinking of any alcohol, even a factor in the progression and future condition of my SCA 5 Ataxia? Whatever information you could give, would be of great help?
Anthony Perkins said:
Alex sounds similar how I started. Don't know if you drink or not I was told it proberly a factor in my case.as cristel says go for MRI.