Tests at Sheffield hospital
Hi, I’m Carol and I run the “Gluten Ataxia and Autoimmune” support group as a volunteer. I am not a medical professional, but someone with a diagnosis of ‘possibly ataxia’ who was desperate to find out more about my condition.
If your local specialist suspects ataxia but does not know what type, as the cause could be genetic, acquired, autoimmune or idiopathic (means simply that they do not know). Everyone is entitled to a second opinion and a referral, so this is the time to ask your doctor to refer you to one of the specialist ataxia clinics, either UCLH, Sheffield or Oxford. It can save time if your specialist suspects what type of ataxia you have and is then able to refer you to the relevant clinic.
Tests at Sheffield:
A new patient consultation with a neurologist is likely to take about 1 hour. It will include a medical and symptom history, a family history of autoimmune conditions, SARA tests and how you are feeling. It will save time if you have all of these points written down. Also dates of previous appointments, MRI’s and tests and the outcomes if you know them. Also write down any questions that you want to ask.
MRI spectroscopy is an MRI scan with additional features. It includes a series of tests that analyses molecules and measures the metabolism of chemicals. Having a spectroscopy feels similar to the usual MRI. MRI spectroscope is only available at some NHS sites across the country. Sheffield is one of the key locations offering this advanced imaging technique.
The IGA t-transglutaminase 6 antibody test or TG6, is just one of the blood tests you may have and is a marker for gluten ataxia and at present it is only available at Sheffield and Leeds. Hopefully it will be available at UCLH and Oxford shortly, ultimately in the future TG6 testing will be available at most hospitals.
The TG2 test is widely available at most hospitals and is used to test for coeliac disease diagnosis. This test will NOT pick up gluten ataxia. If you have been told “your ataxia is not caused by eating gluten as your coeliac test was negative” then question this.
Jim’s appointment at Sheffield hospital:
‘I can remember the day I met Professor Hadjivassilou, sitting in his consulting room and thinking “He gets it, he understands what I’m telling him!” I felt such relief that finally someone had some understanding of my symptoms and how I felt’.
The next article will include ‘How to do research.’
Struggling to get a referral? Ataxia UK can help…
Navigating the healthcare system and securing referrals to specialist neurology services can be a challenge, especially when dealing with a condition as complex and rare as ataxia. The Ataxia UK Helpline is here to help. If you have difficulties getting your GP or local neurologist to refer you to a specialist ataxia centre, our helpline can provide support. We can write supporting letters to help you get referrals to specialist neurology services, including the specialist ataxia centres at UCLH, Sheffield, and Oxford. We can help with referrals to other essential services like neuro-physiotherapy. Our goal is to ensure you receive the expert care and support you need.
If you are having difficulties getting a referral or if you need information, advice or support with another situation, please contact the Ataxia UK Helpline. We will do our utmost to support you and if we cannot help, we will do our best to put you in touch with someone who can.
You can reach the Helpline Monday to Thursday 10.30am to 2.30pm by phone to 0800 995 6037 if you leave us a message, we can call you back any time during office hours (Monday to Friday 9am to 5pm). Or you can email us any time on help@ataxia.org.uk (we aim to reply to emails within 3 working days).
