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[GlennB]

Hi all. Has anyone else been diagnosed with sensory ganglionopothy ? I have gluten ataxia and Limbic Autoimmune Encephalitis . The pain in my limbs is getting progressively worse . Medication is having no effect .

[cocoa]

As you have gluten ataxia, I am wondering whether you have been referred to Sheffield. They are the experts and would be able to offer advice.

[wobblybee]

🙂You can find links on Facebook to Limbic Encephalitis Support Groups

[penelope2]

Hi GlennJust wondering how was the gluten ataxia diagnosed. And if you have been referred to Sheffield. Have you had help with eliminating gluten from your diet and have you had any tests for cross reactive foods.

Some people who are gluten sensitive also have problems with other food groups ie. Dairy.

If other foods effect you then these could also be causing ataxia symptoms.

I too had pain and high fatigue, especially in my legs which has been relieved by GF, DF and rice free! this was discovered by a cross reactive test.

Am now waiting for a referral to Sheffield as I have done all this self diagnosis with the help of private specialists and reading research papers.

In my case I could not wait for the NHS.

I have found that GPS and neurologists do not know or do not accept GA.

Best wishes.

[GlennB in reply to penelope2]

Hi Penelope It was professor Marius in Sheffield that diagnosed me. But living in Grimsby I only get to see him every 6 months. It's a minefield out there I don't really know what I'm looking for

[penelope2]

Hi Glenn again,There is lots of good advice on this site but bear in mind we are all different, have different problems with ataxia and what works for one doesn't work for everyone.

I have spent endless hours on Google and reading research and review papers. Even passed some on to my neurologist but I doubt he even looked at them.

Read as much as you can, learn and this can only help in the long run. At least we can go down "knowledgeable"!!!

👍