Idiopathic ataxia or unknown cause.

[penelope2]

Hi all. I urge anyone who has not yet been diagnosed with a particular type of ataxia , so idiopathic of unknown cause, which means they do not know what is causing it. To contact Sheffield and see if you can participate in a new study into gluten ataxia. Although a gluten free diet will not cure ataxia it may stabilise symptoms for you.Please read wobblybee's post for more info.

[Cupcake12345]

I was referred to Sheffield from London ataxia centre. Sheffield concentrate more on autoimmune conditions and London genetics. They do tests in Sheffield that London don’t so it’s worth going for this reason. I was put on a gluten free diet first and it was not making much of a difference so then they gave me immunosuppressants which helped a lot. They call this PACA (primary autoimmune cerebral ataxia), which they use to label and treat idiopathic ataxia’s. I’m still on a gluten free diet and immunosuppressants but at least the ataxia is stable now. It’s worth being seen in Sheffield this I can’t emphasise enough.

[penelope2 in reply to Cupcake12345]

Thank you and best wishes.

[Frenchoak]

I've been diagnosed with Idiopathic cerebellar Ataxia, but have had a test locally for GA which was negative , so there's no point in me getting involved in the research is there, although my consultant Neurologist has referred me to Sheffield anyway but II'm still waiting for an appointment . I wonder why .y consultant referred me there instead of London which is easier for me as I live near Bristol. He said because waiting time shorter ?

I'm likely to have some sort of genetic mutation that they can't test here, if at all. Should I be going to London instead??

[penelope2 in reply to Frenchoak]

Hi, London deals mostly with hereditary/genetic ataxias. To date they do not have the TG6 blood test for autoantibodies that will pick up gluten ataxia. London referred me to Sheffield when the genetic tests came back negative. TG6 is only available at Sheffield and you need to question your neurologist what tests you have had. Blood Testing for coeliac disease will not pick up GA. The coealic test only picks up about 2/3 of coealics anyway. Perhaps they have found inflammation because of autoimmune?Sheffield will also test for an hereditary type. It is run by Professor Hadjivassiliou who is world renowned for his expertise in autoimmune ataxias. And well worth the journey to see the best in the country for GA.

It is best you contact Sheffield, see wobblybees post for details, to put your mind at rest.

With ataxia we owe it ourselves to research and arm ourselves with as much knowledge as possible. We have to do this as the medical professionals know so little about ataxia.

Good luck with your search for an answer.

[Frenchoak in reply to penelope2]

Thank you 😊 for your information. I'm going to go through my file of letters to establish (or try to!) what tests I have or haven't had done & make a list. After that I'll ring Sheffield to discuss the research & see where I am on their waiting list. Yes, you're right, information is power, but I've got a bit confused about things now as it's SO complicated 🤔 and has been going on since a GP took my symptoms seriously in November 2021. Symptoms since 2019 but I kept getting dismissed by various GP's - one told me it was my varifocals (no as I'd been wearing varifocals 10 years or more!) & to get my eyes tested! When I asked another GP to explain what Cerebellar Atrophy "meant" on my CT scan result, he told me to "Google it"! I should've complained, but didn't have the energy at that time.

[penelope2 in reply to Frenchoak]

Thanks, I'm glad you found that helpful. Yes the whole thing is complicated and I relied the doctors too, it took someone with ataxia to tell me about gluten, that was back in 2020 and l have been reading and researching since then.Best wishes.

[wobblybee]

I’m in Newcastle..but I was tested several years ago for Gluten Ataxia, and found to be negative…although I do find I have a ‘sensitivity’ to gluten if I over indulge..and consciously make an effort to avoid it as much as possible.

Just recently..I had a letter from my Neurologist about recent testing. I’d been put forward for Whole Genome Sequencing…..there was no link with any finding of genetic ataxia.

[penelope2 in reply to wobblybee]

Hi wobblybee I have been signposting to you for your post on Sheffield and a new study on GA, hope this is OK.

The facts to date:

Only Sheffield, and Leeds hospital now, has the TG6 test for GA. This is one marker they use to get the whole picture of cause of ataxia and interpretation of results.

A specialist spectroscopy MRI is only available at Sheffield.

This expertise is only available at Sheffield

With regard to Whole genome sequencing, I will be surprised if that picks up GA. Susceptibility to it yes as in the genes to make this more likely.

The London clinic's expertise is in hereditary and genetic ataxia but they should pick up inflammation.

London will.refer you to Sheffield if you ask but all neurologists will refer you if you ask.

Personally if I was you then try a 100% gluten free diet for several weeks or months even to see how you feel.

I am gf, df and now trying grain free too, this is similar to a Paleo diet and very restrictive. But the earlier symptoms of ataxia were coming back. Perhaps my age or maybe because I have eaten gluten all my life with digestive symptoms that I didn't realise and was not told there is a link and the damage is done. Gps just love to write prescriptions rather than doing joined up thinking.

Best wishes.

[wobblybee in reply to penelope2]

🙂I was referred to Queen Square, in London, by my Consultant Neurologist a few years ago, and after appointments there ..they referred me to an ENT Specialist in London.

🙂It was Queen Square who recommended Whole Genome Sequencing.