What were your first symptoms

I started with difficulty v with small motor skills speech problems and weird tingling/crawling/dripping feelings. along with tinnitus and poor coordination but not too much with my balance until about a year and a half ago. my balance has deteriorated quickly and my diagnosis was given for CA. I just wondered if it was normal that it took 6-7 years to see balance problems. I still question my diagnosis becuase the other symptoms stood alone for so long. How about you? did you start with imbalance or smaller symptoms? mine is suspected to be genetic but testing hasnt been completed and I have no family history. also my neuro feels that my joint laxity, decreased muscle tone and frequent injury are related to the CA

Hello, my name is Morlando Ross. I have been living with this pain for over three years. I was diagnos with SCA2 which has been passed on by my grandmother. I am now 40 years old. I was having problems with small issues that delt with mobility issues now I have Parkinson's and many other problems I won't list because I am retired and will with this lovely problem for years to come. At 40, I learned that life and living is messeared by you and God. I can't promise anybody anything because I don't know every year when l will get another illness. I have tried suicide it almost worked. My soar throat at times try and kill me but it has not done it yet. And, my blood pressure gets really high when it once too and my ankles swell huge for no reason I know. My life is explained more at Facebook.com under Morlando Ross with the photo without the glasses. I will say my life is now is the hands of God and can be appreciated by my two children who loves me without fail.

Left for arm tingling , fine moter skills and speech difficulty… Now my balance when I’m tierd…

I have been somewhat uncoordinated for a long time - I was taking martial arts and my balance got worse over time doing that, not better like the instructor would have thought. I was finally diagnosed with SCA about 5 years ago - recently when I get tired I notice that my balance and speech get worse. The first symptoms were balance-related - but only noticeable when I exerted myself (karate or running). Now I can see signs of balance deterioration whenever I am awake - to the point right now that I can see that I'll eventually need a cane full-time.

Hope this helps!

Dear Mommy Medic, I was diagnosed with ataxia eleven years ago (unknown cause) although I now recall very small symptoms starting about eight years before diagnosis. My first symptom (a year before I told my doctor, as I couldn't believe anything could be wrong with me) was trouble swallowing, as well as going down stairs (knees would shake). My balance started to get bad about four years ago, as I fell, injuring my back. I've used a cane since then, and now use an Access Active Rollator for pleasure walking. My balance is getting progressively worse. Hope this helps, although everyone is different depending on their ataxia. Exercise for strength and balance seems to help me thus far...,;o)

Mine started with severe headaches and vertigo. It took about a year after that before they finally suspected some kind of ataxia. I do remember strange symptoms spontaneously occurring before that, like tingling, and muscle jerks or spasms. But, they never lasted and doctors felt I was fine. Now I’ve progressed to daily vertigo/balance issues and tingling/pain. Episodic ataxia still suspected but not diagnosed as I still have a normal mri. I was diagnosed with ataxia in 2011, so we will see what the future brings.

One thing I have found is that there is no certain progression of any of the symptoms and the symptoms can vary from type to type and even if you have the same type as someone else. I was diagnosed with SCA1 about 10 years ago and the only symptom I had was that I always seemed to be klutzy and tripping. This stayed that way until about 2 years ago when I started having problems with my writing/typing and sometimes my speech.

My balance problems appeared occasionally 3 years ago and seems to be related with fatigue. Am waiting for test results. Neurologist says i don't have Ataxia, but I have all the symptoms.Speech communication getting weird and short term memory less.

I started out in 2011 with problems turning corners--like my foot stuck to the floor --and if I leaned over like to pickup something I just kept going and fell over, by Jan 2012 my balance got much worse, I noticed .I couldn't write, I was chronically constipated, and when tired it was hard to talk or speech was slurred. It got progressively worse from there. 'the cause is undiagnosed as of yet. I don't care if there is no cure or treatment. Everyone seems different. No known cases in my family. Just wondering--I have always been somewhat ambidexterous, doing something both right and left handed, but not writing or eating. I have also been somewhat klutzy through life, too. About the time I noticed the ataxia or just before I noticed I was doing more things consistently left handed and even things like reaching to turn a doorknob with my left hand. I mentioned this to PCPdoc sometime but never got muchof an answer to it. Is it connected?

First symptoms were balance, a positive romberg test. At this point I was working and denying that I had any problems. I ignored my "shopping trolley walk" as I called it, slurring of speech ( my boss asked me if I had been drinking"), and falling down, stairs, in the garden, in cupboards and also choking. My colleague at work did a hicks manoevre on me, when I was choking. It created a drama but an unnecessary and alarming event. My handwritng is very bad, so bad even I can't always read it.

A few weeks ago I was all pleased because I have had a diagnosis of cerebella ataxia at the end of July 2014 after 4 years of tests. I saw many consultants, including a neurologist and a psychiatrist, none of which identified any problem. Along with other spedcialists, the psychiatrist I saw thought that the tiredness and intellectual decline was psychosomatic as there was no indication of brain deterioration, no altzheimers and no dementia, a normal mri. Good but he has said completed a report that says that there are psychosomatic issues with my belief that I have brain deterioration.

Then I was diagnosed with Cerebella Ataxia in July andI felt vindicated that there really was something wrong. Then I saw a Neurologist yesterday, I felt that she was dismissing the whole thing, it was a "cluster of symptoms" and no cause identified. idiopathic ataxia, she said Sorry butr this is not a diagnosis, sorry if this is confusing she said. More blood tests ordered b y her to see if there is a cause, ie a genetic link. If there isnt then she will, I think put it down to me making it all up.. I said I felt like a performing poodle with all the tests that have been taken

I now feel demoralised, and I now just want to deny that there is any problem at all as I feel it's all been put down to psychosomatic issues which means I'm a bit unstable of course. I am fed up of having tests. I await hearing whether or not there is a genetic link she said "but there probably won't be" she said (the neurolotist) neurologist yesterday,. Now I feel like refusing any more tests as I think the belief of medical staff is that I'm making it all up and there's nothing wrong with me.

My work contract terminated due to ill health, I am considered by my GP to be not fit to work but I am not sick enough to claim amy work related pension,. Anyone else have a similar experience?? .

I was diagnosed with SCA in April by a geriatric specialist who realized something was not right and sent me to a Neurologist. I have always had difficulty writing, and over the past few years increased difficulty with balance. Genetic counseling showed nothing as did research into family history. I also have tinnitus, hyperacusis and some vision issues. Looking back (I am now 72.) I suspect that I have had this for many years. I always had problems, even in School, taking part in athletic activities etc. I still have more tests coming up and will wait to see what they tell me.

What a dreadful experience. I’m wondering where you live. There are some excellent centres here and there in the States that are excellent at dealing with ataxia. Maybe you can get some advice on the site about which doctors/medical centres have been particularly helpful. It might be worth the expense to stop dealing with doctors who tell you it’s all in your head because of their own ignorance.

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Mish, where are the excellent centers in the States that deal with Ataxia please? I waited 2 months to see a neurologist at UCLA Ataxia Center, which is supposed to be one of the top 2 in the US. She sent a resident doctor to my first appointment. even though she was in her office and consulted with him, They say I don't have Ataxia, and proscribed a cane. My 1st neurologist said I have a "mild case of Ataxia Cerebellum". I don't wanr to have to go to doctors for a few more years and then get diagnosed because I am worse, Has anyone ever stopped the progression of this disease?

I am here adding to this discussion that you need to know you. You need to know that your Ataxia mutates and you need to discover if it’s high or not. If its high or low determines a lot about things you never knew about. Make a journal of you life. Make a medical journal or you and your everyday Ataxia life. Over time it will tell you things that your doctors have to note and reveal unforeseen things. Take control by documenting it’s not only for you it’s for others to learn. KM, TM! Ross

Sending this one up :loudspeaker:

I’ll be studying :thinking:

Interesting topic! Mine “started” with a cloud when looking with my eyes. Sometimes when you wake up your eyes might be cloudy. Rub your eyes and the cloud goes away. My cloud never went away even after washing my face. Not too much longer, my balance started faltering and my coordination also faltered. Balance not so good anymore.

Symptoms started about 9 yrs ago when I went through HepC treatment. It was balance and fatigue. The Ribavirin and Interferon I took daily for a year took a toll on my body even though Dr’s are told side affects will go away. I would for no reason fall over working in my flower bed. I have seen so many dr’s that have continually said “its all in your head” and to the point of telling the last neurologist if you say “its all in your head” I was going to pop him in the nose. Well…all he said was I don’t know whats wrong. Finally diagnosed less than a yr ago. The HepC meds in one statistic says 83% of women have cerebellar ataxia. Some days are better than others now with typical symptoms. Has anyone gone through HepC treatment and took the meds I took and now have CA? Would love to know just how many others were lied to.

At first we have a tendency to brush our symptoms aside, denying there may be any problems, questioning them as if they are just some temporary phenomenon.
Some of the first symptoms for me (years before an actual realization and diagnosis) where of course the usual balance and coordination problems, they are easy to dismiss as something obscure.
But most noticeable was erectile dysfunction, embarrassing and persistent. Although, not the end of the world by any means, a definite devastation to man’s state of sexual capability. An indication of vitality and general wellness.
I’ve suffered with constipation most of my life, however, bouts became more frequent and intense.
At first my GP dismissed it as “all in my head syndrome”. Well he was virtually right! I visited many professionals before landing in a neurologist’s office. I endured a bar-age of tests. I was then informed nothing could be done.
The rest is history. These symptoms where 9 years ago in 2009. After many conditions where ruled out, I was diagnosed with MSA in 2012.

Look into Solgar Magnesium Citrate pills [they’re vitamins]. They should help with any constipation problems except if you have a blockage.

Yup. Thanks Chas! I used Magnesium Citrate, they worked well for me for a while. :slightly_smiling_face: I have good results from polyethylene glycol. My doctor has also passed on some free samples of Fleet enemas for when things become real bad! It hasn’t come to that yet. :grin:

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