Non neurological ataxia

[misters34]

As my heading states is there a form of ataxia that wouldn't show up in mris.

[jill55]

Prof Marios Hadjivassiliou and Alessio Fasano both have YouTubes and talk about coeliac ataxia. This may not show up on MRI's. Apparently you need a different more detailed scan . Prof Marios is in Sheffield and runs an ataxia clinic. I was diagnosed aged 61 with coeliac disease by my neurologist my coeliacs is silent. ie: I do not have symptoms of the gut. I do not have a firm diagnosis yet but suspected coeliac ataxia. Nothing showed up on my MRI. Hope this helps.

[AnnaP2016]

Brain scan can only show structural damage but not signalling problems. Also you will need to have quite a substantial structural change before it shows on MRI. If you just do a couple of scans in a short period of time, it will be hard to see the progressive changes. My ataxia is channelopathy, which is a signaling issue and such will not show on MRI. MRI is just one of the tools to examine the physiology. If you have behavioural manifestations that should warrant the diagnosis already. All ataxia is neurological, just depending on whether there's a right tool to see the problems.

[Missile in reply to AnnaP2016]

I, too have ataxia and normal MRI's. My neurologist is certain that I have an as yet unidentified channelopathy and my symptoms are intermittent and triggered by exercise, caffeine and the cold .

I'd be interested in talking to you Anna P.?

[misters34 in reply to Missile]

Hi Anna I wasn't asking for myself but my sister, she shows symptoms of ataxia but has normal MRIs.

X

[AnnaP2016 in reply to Missile]

Hi Missile, thanks for your reply! My symptoms match to that of EA but they are still not sure which genetic site is causing it. My condition is pretty random and more often than not there's no specific trigger. However as you said, exercise can set it off, but that's restricted to exercise that requires balance (cycling, running, vigorous walk), im totally fine with swimming. I'm ok with caffeine, cold and heat as far as I'm aware. I just had a significant episode (I define an episode when I lose everything including speech since my gait ataxia is very frequent) today after 2 months on Diamox with relatively mild symptoms. You are very welcomed to PM me I only just had it since last year so really don't know what I should expect in the years to come etc 😐

[Missile]

Hey Anna, thanks for the reply! I will pm you but just due to go on hols out of country until 13th May!

Best wishes,

Michelle (Missile)