Getting a diagnosis

[GlutenLadYorkshire]

What test do the neurologist do to see if you have ataxia?

What do they need to prove that you have this condition?

Thanks for reading

[KiwiBob]

I had lots of tests done. It’s a bit of a blur.

One test had me putting my hands in ice water. Another was to do with sound. There was a visual test. Bloods tests.

Lots and lots of test done.

What they did not do was go for a walk around the hospital with me. If they had done this they would see the real symptoms and the affects Ataxia has on me

[GlutenLadYorkshire in reply to KiwiBob]

Thanks kiwi Bob your information has been interesting, I suppose I’ll have to wait and see if there is any conclusion

[Tiggywinkles]

Hi,

My diagnosis was finally done via blood tests. I had a number of MRIs done which showed no changes but I had lots of blood taken to test for various ataxias which all came back negative. Finally, my neurologist asked shall we do a test for Friedreich's Ataxia (not done before as I was already in my 40's) and, aged 49, it came back as positive! Best of luck with your diagnosis!

Heather

[GlutenLadYorkshire in reply to Tiggywinkles]

Thanks for your input

[auntiesally]

after mri,s cat scan, B12 injections finally a genetic blood test confirmed sca2

[GlutenLadYorkshire in reply to auntiesally]

Thanks for your answer

[benning]

Why would you want Ataxia?LOL. If you think you have it DO YOUR RESEARCH -ONLINE ETC.

[GlutenLadYorkshire]

I definitely would not want to have ataxia the neurologist have suggested it as I had similar symptoms last year to ataxia, I’m just asking people questions to compare symptoms I’m of to see a specialist in ataxia to confirm if I have ataxia or not.

[KiwiBob in reply to GlutenLadYorkshire]

I really hope it is not Ataxia you have.

Good luck with NOT getting diagnosed with it.

[GlutenLadYorkshire]

I hope so too but if I do it’s nice to know that there are others that can understand your diagnosis.

[suzie44na]

Hi, I think it is most stressful not knowing what is wrong with you, I am still searching after 20 plus years. I might be seeing someone at the ataxia clinic too to rule this out, I was wondering too what tests they would do. Hope all goes well for you

Suzie

[GlutenLadYorkshire]

It certainly is stressful, I have to give up a well paid job and driving in the meantime which I think has made it 10x worse, I’m not sure what test they do, I just want an answer and to get along with my life, thanks I do hope that you find an answer also.

[coat2003 in reply to GlutenLadYorkshire]

that driving is the big blow, I never even learned, no insurance wld consider, slower eye reflex, my husband is my eyes, ears on the road, he used to drive (sick himself), but as a part of his recovery, will brave driving when ready, it'll b e a hard slog...but can understand NO INDEPENDENCE...In a way, let others to drive you , LESS STRESSFUL, NOBODY INDICATES THESE DAYS...

[GlutenLadYorkshire in reply to coat2003]

I haven’t driven in a year, I live in a very rural location it’s hard no public transport, I have to rely on others it’s probably the most annoying part of it

[coat2003 in reply to GlutenLadYorkshire]

You have my sympathy. I live in the city, outskirts, relying 100 % on my husband (ill in hospital), but his all 4 kids (from the 1st marriage)are brilliant.they take me to the hospital, bring shopping in...No need to go anywhere...Have a walker, but too cold out, anyway.Worst things happen, at least no stress, while driving....

[GlutenLadYorkshire in reply to coat2003]

You right with no stress in driving but it was my livelihood which is a big blow, I have to rely on my parents in law and wife to get me about.

[kuchee in reply to GlutenLadYorkshire]

Why would you give up a job and driving?

Am 43 performing job and driving a car (daily 50-70 KM).

Yes, its depends on your employer. Is it ok for them to keep moving the balls with your condition? and you want to continue? i would like to suggest not to leave the job unless you are over aged and finally would wand a retired life. Please Re think!

[GlutenLadYorkshire in reply to kuchee]

I would go to work and continue to drive but my neurologist suggest that I don’t it’s really doing my head in

[kuchee in reply to GlutenLadYorkshire]

When there is will there is a way. Keep it up ans stay blessed.

[GlutenLadYorkshire in reply to kuchee]

Thank you

[coat2003]

I would go 2 ways, suspicion hereditary- easiest I am sca2 after paternal grandma...she was falling in her 50s, she passed on now (1999) she was 72...(for central Europe a nice age) here too soon, my husband 80...active, driving the car....For me personally 2 tests, after initial consultation and my description, my father his gait...wasn't drunk, later on was...didn't work alcohol, depression set in...Mri scan (experience itself) ONLY backed up with a genetic test blood test...I am 70% affected...My bro has it as well, but MUCH MILDER THAN ME. and this is the second prong...MORE DIFFICULT,as grey shady area, the mri scan showed changes in lesions, but not much. That's the hardest for medics...sthg not RIGHT, slurred speech, dizzy, almost falling one side after sudden change of motion from sitting to standing...technically we are good example. I am more affected, he less but psychologically worse, as he himself uncertain what's what....In a weird way, my walking flatly affected, the loss of balance, slurred speech, must be careful as swallowing problems...progression uncertain, doing physio core exercise, balance cushion...If it episodic type or some idiopathic nature, harder to put finger on it.

Hope this explanation helps...There are supplementary therapies, but no concrete medication...Vitamines, exercise...exercise of tongue and hopefully neck muscle exercise....mainly STAY POSITIVE! the right attitude is 90%.

[GlutenLadYorkshire]

Thank you it be nice just to have an answer

[Carolss]

I have had ct scan, mri, swallowing test, toe to heel walking, foot shin test, blood tests....about 15 wials of blood, EKG,wore a heart monitor., check eye movement...that's what i remember.

I have fallen and passed out about 5x. Still waiting for a diagnosis.

The definitive test ifor r i think is the toe to heel walk

[GlutenLadYorkshire in reply to Carolss]

My heel to toe isn’t great but all the rest is ok but in real terms how often do you walk heel to toe?

[coat2003]

EVEN MORE HEARTBREAKING...I know a couple of car enthusiasts and they'd be lost without driving. But needs must, stay safe either with your wife or in laws.

[GlutenLadYorkshire]

Yes unfortunately it is what it is there is nothing I can do about it just thankful that I have a lovely wife and two daughters.

[Rezzy3 in reply to GlutenLadYorkshire]

I’m new to this forum (1day member going on 2nd day) and recently diagnosed with sporadic sca after five years of not knowing. I’ve learned more in a day a half than in the last 5 years. You will realize that the only thing typical about ataxia is that there is no typical. The only constant is that everyone on here has found little ways to help stay ahead of the disease. Make sure to read every response because you will get that one piece that lets the light go on.

Stay positive and hopeful!

[GlutenLadYorkshire in reply to Rezzy3]

Sorry to hear about your diagnosis and thank you for your post

[auntiesally]

I personally was more upset with the diagnosis once I got it in writing, but as you say it is what it is!

[Hidden]

It really depends on the type. Sometimes they have to do various test but many can be detected trough a DNA blood test.

[lindamctaggart]

I had a routine physical prior to going to Europe with my daughter for my 60th birthday (I live in Toronto, Ontario, Canada so this was big trip for us!) Attempting to pull myself up onto the examination table I grabbed on to a lamp to help me up. My doctor saw this and asked me why I did that and I said it helped me balance myself up. Well, she gave me my physical and then started all kinds of questions like how long had I noticed my imbalance? What are my other symptoms? And I said symptoms of what? She said that she couldn't give me a diagnosis and referred me to a neurologist and told me to make an appointment soon. I was a bit taken aback as she then said that perhaps I should cancel my trip! Well that wasn't going to happen! So I went home a little bewildered. As I started to gain more information about imbalance I became somewhat frightened as it led me down the road to MS and Parkinsons. I had always considered myself a very healthy person so I was personally disappointed with myself that I had done something wrong to bring this upon myself. We went to Europe and we had a wonderful time with me just having the odd imbalance on the cobblestone and stairs. I had the appointment with the neurologist when I got back home and she had me do various tests with my legs, my speech, my balance...the test that she paid close attention to was the gait walk where you put heel to toe down a straight line...I couldn't do it, I fell over. Further testing revealed I couldn't run very well or jump or climb stairs without the rail...she arranged an MRI which revealed that, along with the the results of my physical, I had a mild form of imbalance known as ataxia. Ataxia...I had never heard of it before. How did I get this?... what are the long term implications? She couldn't answer all my questions, apparently it's not very common and that most family doctors will never come across this condition in their career. So I have an appointment to go back to the neurologist in 9 months to see how I'm doing. My neurologist feels it is slowly progressing ataxia... I feel good right now...my walking is sometimes annoying and my speech is at times slurred but that's really the only symptoms apparent at this time...I take Omega 3 and krill and magnesium and Vitamin E. I do tai chi, I have a stationary bike and I walk as much as I can...I do get tired though and have to rest if I'm on a long walk. So there's my story about getting a diagnosis of ataxia. Good luck with your personal journeys!

[Lilielost]

I had various tests over 2 years and as I was adopted had genetic blood testing.

I was diagnosed with SCA6. Lilielost.

[GlutenLadYorkshire in reply to Lilielost]

It seems to me that getting a final diagnosis is very drawn out process

[Lilielost]

Hi Bally1982. I started to have dodgy speech in Dec 2015. I had sepsis and dka (type 1 diabetic) and it was discovered that I had colon, uterine, and ovarian cancer. My speech went slurred suddenly when I was discharged from hospital following the sepsis.I had a migraine aura, a slight headache and my speech has never been the same since.

The cancer op was in April 2016 and was a success. The ataxia has progressed, but I am still walking although a little wobbly and I need a walker when I venture out.

I have accepted the ataxia, but have yet to embrace my speech, I am letting it isolate me. I also have double vision and nystagmus.

Hope you get a diagnosis very soon.

[GlutenLadYorkshire in reply to Lilielost]

Thank you, sorry to hear of your problems it must be difficult if there is a cure it wouldn’t be such a bad thing