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

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  • 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:

    ataxia.org.uk/Pages/News/Ca...

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

    ataxia.org.uk/how-is-ataxia...

    Harriet

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

  • 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.

  • 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.

  • 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.

  • 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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