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Ataxia UK
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How is SCA diagnosed?

About fifteen years ago as a teen I was diagnosed with Irritable Bowel Syndrome after a few traumatic events, fast forward to present day and I suspect it was actually a miss-diagnosis of Coeliac Disease.

Towards the back end of 2016 I noticed I was developing the following symptoms; Frozen Shoulder (shoulder pain, weakness and inability to raise arm above my head), extreme fatigue, light headiness and dizziness/vertigo as well as my balance being way off. I find I would get extremely hot doing the simplest of things although my feet /toes would be cold. I also noticed a dramatic difference in my speech, it’s now slow and slurred and I think it’s probably Dysarthria.

I went to see GP who rans some bloods (inc. Thyroid Check as this runs in my family) but all came back clear.

No doubt I have some form of Ataxia, either Spino Cerebellar or Gluten induced.

I started a Gluten Free lifestyle back in December 2016 and since January 2017 have been taking a minimum of 1000mcg Vitamin B12 (Methyl) with 400mcg of Folic Acid.

What can I do next? Will I get worse?

9 Replies

Hi sebbouise

Thank you for your post.

The symptoms you describe definitely suggest something neurological is going on, possibly ataxia. You need to get a confirmed diagnosis. I would advise discussing your concerns with your GP and say while you accept your blood results are within normal limits you feel there is definitely something else going on. I would ask their opinion as to what they think might be causing your symptoms and ask to be referred to a neurologist. If they suspect ataxia you should ask to be referred to a Specialist Ataxia Centre. The following link explains more about these:


I have also included a link below to how ataxia is diagnosed which you might find helpful:




What was your b12 result? What made you start taking methyl based b12?

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Thanks for your reply - I didn't have a Vitamin B12 Blood Test undertaken, but have read a lot about B12 causing these types of issues. As you can't overdose with B12 (as excess is excreted in urine) I just took the initiative to take an additional supplement.

I have been taking a minimum of 1000mcg B12 daily.

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Yes you are correct about b12 but you have put yourself in a situation whereby you wont get b12deficiency as a diagnosis because you have supplemented. You could hop into the hu pernicious anemea forum for some info.


How long does it take to recovery from a deficiency with an oral dosage of 1000mcg a day?


How long is a piece of string? It depends on why you are deficient in the first place i think. I am coeliac so my stomach doesnt absorb so tablets would have little or no real effect unless in high doses. Which is why many people are given injections.

Same with getting a coeliac diagnosis you would need to reintroduce gluten to your diet for about six weeks. Loads of info on the above mentioned forum it might help you.

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if it is ataxia im afraid it will get worse but the only way i know of to be sure it is that is to get an mri scan done, lets hope its not that!


There are lots of different causes of ataxia (which can be a symptom of lots of different disorders) with which an MRI scan can be normal. However I understand that a normal MRI is unusual in cerebellar ataxia, but the degree of atrophy/shrinkage of the cerebellum seen on an MRI does not always correlate to how severe the symptoms are. Damage to the cerebellum in gluten ataxia frequently doesn't show on a normal MRI-a specific type of MRI should be performed.

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I believe it is called a T3 scan. But I am new to researching this. I have no idea how easy it is to obtain one in UK.


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