At what age were you diagnosed and how bad was your cerebellar atrophy? I'm wondering because I'm 21 and it took almost a year to get diagnosed because most doctors skimmed over my cerebellum, thinking that it was pretty normal. It took a movement disorders specialist to notice it was atrophied and that my movements were ataxic. I also have gotten a lot worse physically in the last 2-3 months whereas when I first started noticing things, they were more subtle. Were some of you more easily diagnosed because of more extensive damage to the cerebellum (that I assume will happen to me as time goes on)?
I was diagnosed with gait ataxia at 58 I am now 71 ; Mine was caused by damage to the cerebellum .
I'm afraid that I can't be much help to because of our age difference .
I certainly understand your issues with the misdiagnosis . I am still having those issues. .
I want to ask for some views but it so complicated that I can't bring myself to explain . I really would like to know
if Ataxia can go into remission .
I have Apraxia & Blaphrospasm. they subsided. ..I phone the B.E.B in Canada and they told me that it certainly does.
I spoke with a woman who is in her 5TH yr. of remission . When I went for ny Botox injections ( for the Blaphrospasm , I asked my Neuro . about is , he wasn't aware . I went without the Botox for nearly a year.
The best of Luck,
God Bless You,
Mary ELena
I was diagnosed 20 years ago at the age of 48, it started with a slight stagger and some words being slurred at that time I was a paramedic and it was one of the nurses who spotted thatt something it and advised me to see my doctor. I had to go through many tests to rule other similar types such as Parkinson's , MS, MN, my own doctor at first said that it may be Cerebellar Ataxia but sent me to see a Neurologist to make sure. since then things have got progressively worse I stagger badly and slur my words but I keep my chin and get on with it. I'm sorry to say this to you it is a debilitating illness and not much can be done for lets hope some day someone will come up with a cure.
I was diagnosed at about age 70, but like you, subtle symptoms were noticed for several years prior. My initial MRI was normal/ But three years later, when I complained of needing to touch the wall or hold onto a piece of furniture, constantly needing to have a third point of contact to feel balanced, the second MRI showed an atrophied cerebellum. Viewing the pictures, it was surprising to me to see how much had occurred in a short time. It was as if there was a precipitating event. This kind of thing has been mentioned before in these posts by others.. And yes, I seemed ok (to me) until I slipped and fell and broke a bone in my lower leg. So, 3 years from normal to abnormal. My symptoms continue to appear or get worse- obvious staggering, can't walk a straight line, tipping over, the occasional fall, chronic cough coming from the esophagus, some slurred speech, peripheral neuropathy, and on, and on.
I feel your pain. I started noticing problems in my speech and gait in my early twenties. I simply chose to ignore these problems for years until I noticed people talking behind my back and my own family calling me a spaz! After almost 20+ years of being tested for every disease known to man they found a shrinkage of my cerebellum and I was diagnosed with some type of ataxia. I am now 52 and using a cane and occasionally a walker. My insurance refused to pay for the genetic testing (too experimental) to determine the type. Until there is a cure, proper diet and exercise seem to slow the progression.
Hi Runner.
I was 44 when I was diagnoses by MRI. Only I could tell something was not quite right at the beginning. Now I am using a rollator to walk with indoors, wheelchair outside. Speech is (I think) very hard work. Co-ordination is bad, writing is non existent etc. Text me on Facebook if you want to know anything else. My full name is Verjinder Panesar.
I was diagnosed earlier this year year with SCA. I suspect I have it for many years, it it has only recently started to affect my balance, and my writing has become very bad. Genetic testing and what little I know of my family history indicates that it is not inherited.
My ataxia came in my mid to late 50's. At first,my dr. thought it was "sensory ataxia" whatever that is. Two MRI's later< I have CA/
induced by autoimmunity. Hate it. One neuro did tell me that while my version is not hereditary per se, I might have a descendent in 20 generation s with CA. He/she will be younger at onset and the CA will be harsher. So far everything he has said, was off though.
My husband was diagnosed this month. I always thought he was a little clumsy, but I would say in the past year it became particularly noticeable. Also, his speech started to sound slurred. That's when I realized it might be a real problem, and not just his lack of coordination. He didn't accept the situation until a few months ago. I wonder if perhaps fortunately we do not have a family doctor - as we live in an area with a doctor shortage. He went to a walk-in clinic and basically told them he needed a referral to a neuro and they gave it to him. I suspect that if we had a family doctor the whole diagnosis process would have taken much longer while s/he considered more mundane causes. At any rate, the neuro was quick to act and within weeks he had had his MRI and was diagnosed. The MRI showed that the cerebellum, which naturally shrinks with age, had too much "white space" for a man of his age. Screening is ongoing to determine the cause, but at least now we know it is something real and we can immediately start vitamin supplements, quit alcohol completely, go GF, exercise and reduce stress in our lives. I am sure that making these healthy changes alone will slow the progression of his condition.
Good luck!
1 Like
I was diagnosed when I was 52. .“in. 2008. It took a year and more.”…"I went private at first but did not get anywhere.“the private neurologist thought it was down to age.”…“I finally got diagnosis at The National.”“my symptoms were not pronounced at first…used a cane, and then a frame and now I am wheelchair bound.”.i choke a lot, I can’t write, speech is slurred, depression
My mom noticed a late walker and so she took me to the pediatrician when I was about two and a half and I was diagnosed with ataxia then. I don’t anymore I used to get brain scans, my Brain was more atrophied every time. Other parts of my brain started to atrophy in overtime as well
I was 48 when first diagnosed but I knew something was wrong about 2 years before.I am now 55 and this last year has seen me deteriorate very rapidly.
I am no longer mobile,have a violent tremor,can only say the odd word and have gone from a state of independence to complete dependence.And I tthought I was youngish but looking at this site there seems to be others worse off.
1 Like
I was 69 when first diagnosed, but that took 2 years.I first noticed symtoms in early 2012 with a change in gait and unable to pronounce some words.
Ray
Thanks Corey
Have got Cerebellum atrophy as well.Have not had a recent MRI so don't know if the pons is affected also.MSA has also been mentioned to me by Neuro but I don't conform to that either.Feel much better knowing I am not the only one with rapid symptoms.
Hi Runner,
I was diagnosed at 28. I had episodic symptons, falling, tripping being clumsy since i was a kid and i also hated gym class. When i recorded my greeting for my phone when you go to voicemail, I hated the way I sounded because I sounded like i was slurring my speech and i speak very slow. It took 40 tries to get to the one i liked. LOL.
At 28, i had an episode where i was struggling to walk on my own and had to hold on to the wall. that was when i decided to get diagnosed. i already knew i had CA because my dad has it and i see the way he moves.
im 32 now, and im walking on my own, no cane, no walker. Since then I've exercised by doing pilates and lots of stretching. I eat healthy and indulge on a little bit of junk on some weekends. I also work full time which is making me tired more than ever but, im still young and gotta make that money. lol.
The trick is to eat healthy-less carbs, dairy, sugar or none at all, exercise-pilates, yoga, and think positive. its easier said than done but that is the way to fight this disease. Dont feel sorry for yourself. there are people far worse off. Do everything you can do, take one step at a time. Go slowly. Because I exercised and with the goodness of God, I am able to move around on my own. i am able to spend time with my friends.
Youre 21. That means youre still young. Start that healthy life style, I would say not to drink alcohol but then id be a hypocrite so if you must, drink small amounts. Dont worry too much about the progressions and the future.
Runner - There is no cure for ataxia, but exercise seems to help. From other people's comments on here it just seems like when they are doing some sort of exercise they seem to do better. Ataxia is always going to be progressive with no cure but maybe the exercise can help.
I'm just doing a stretching/strengthening class right now because of a knee injury but I plan to try more once it has healed. I figure it can't hurt and maybe it will help. Whatever I can do to prolong the time before I need assistive devices I will try.
Dear Runner, I was diagnosed eleven years ago (at 49) with Sporadic Cerebellar Ataxia (idiopathic/unknown cause), although I had very small symptoms starting about eight years before diagnosis. My first symptoms were trouble swallowing and shaky knees going downstairs. i waited almost a year before going to my doctor, as I couldn't believe something could be wrong with me, as I had always been so healthy, active and athletic. Anyway, he sent me to a neurologist, and the rest is history. My ataxia effects my gait/balance, dexterity, speech, swallowing and vision 24/7. About four years ago I started using a cane, as I took a fall really injuring my back. I use an Access Active Rollator for pleasure walking...,LOVE it! I try to eat as healthy as possible (nothing processed) and exercise for strength and balance. My ataxia has progressed although slowly, because of this I believe. My best to you...,;o)
Corey
My Neuro said some elements of MSA because of low blood presssure but it has always been low.Although there was a smaall change it wwas not significant enough. I certainly have no fainting on rising and never have.
II mentioned wee probs and tthe Neuro immediately thoughtt of MSA. There is rapidity of progression but MSA nurse did not think it was MSA.I don'tt think the Neuro knows.
I have watched your videos and you seem` like me about two years ago.Now I am in a wheelchair as I cannot walk at all.
Also I have tremorr,little speech not slurred, wobbly vision.No fatigue and no swallowing probs,.Diagnosed with an unknown CA.Confused.
I was diagnosed st 38 in 2009 after my karate sensei started me down the path to figure out what is wrong with me. I was taking karate for 4 years - she took me aside after a class and told me that in all her years, after 4 years training she`s seen people get better and seen people stay the same - but she had never seen someone get worse! That spurred me on to figure out the problem - after an MRI (and a bunch of other testing by a physiotherapist) the neurologist diagnosed SCA and sent me to a geneticist to try to figure out which one - I say try because they still don`t know which one! All I know is my balance has deteriorated, and my speech is affected. I`m not to the point (yet) where I need an assisstive device (cane/crutches/walker) full time, but I know it's coming!
I guess 20.
The doctors knew something was up after the chemo treatment when I couldn't walk normal. It wasn't until 5 years later when I got hospitalized for intense head pain that they saw that I had cerebellum atrophy. The ER doctors blew it off thinking I was an alcoholic.
I am still trying to get down to the bottom of it.
I think it is a good amount atrophied. I have fatigue, swallowing problems, slurred speech, vision problems, walking/balance problems , bad hand eye coordination, problems handwriting, and more but I can't think of them.