Log in
Ataxia UK
2,713 members2,548 posts

MRI of brain - cerebellum atrophy or normal?

I just had a genetic test done trying to figure out which type of Ataxia. No results yet. Anyway, I have also had an MRI which showed no cerebellum atrophy. My symptoms started close to 13-15 years ago. Has anyone had an MRI show unremarkable brain with no leisons or cerebellum atrophy and still been confirmed with a form of Ataxia?

19 Replies
oldestnewest

If you have a cerebellum area back of the brain the neurology will pick it up. You should have had a number of tests with knowing what type. Gene takes a vital part to diagnose the type to see if medication can be taken. What this does the ataxia pause the situation which on record will not get continued slight changes. Each person is different as to which type you have. If they have answers the neurology would be able to tell you. If you have a complex issue then it goes to a professor. Which he will look in depth with ataxia who specialise the situation, We only have limited ataxia professors across the country. It does at times take a while for results with certain tests for this can not be helped. Take care

Reply

Yes, I have no recognised or typical form of ataxia but this is my 'label'. Nothing showing in the cerebellum except much inflammation. I have asked to be referred to a specialist centre as throwing steroids at it as a possible aid to helping seems all wrong to me, last time I tried steroids I became very disabled, months later, I am still not as I was before taking them but am improved a bit. I have a food sensitivity, steroids contain that substance... I live in hope that mine is gluten ataxia, but of course, it may not be. Only specialists will be able to find out. My neurologist is lovely and very kind, but does not know anything about gluten ataxia. I am in the UK so treatment routes may be different depending on where you are in the world. I have no idea if this will show in genetic testing, though a recognised form might? I'd be interested to know how you get on. These posts can be very helpful, thank you.

Reply

I was hoping for this too, but have been off Gluten since March without change. :(

1 like
Reply

Have you come across the book - Why Isn't My Brain Working - by Dr Datis Kharrazian. He has websites along with a Newsletter. He mentions in this very fat book that gluten molecules can penetrate the blood brain barrier and cause inflammation. Have not done any further research - but it is possibly out there somewhere.

Are you B12 levels good ? Best over 500 I have read to prevent cognitive decline and neurological symptoms. I self inject weekly and more often when I feel unbalanced ...

2 likes
Reply

Thank you for that. I am delighted that is is available on kindle which is easier to see and will buy it. This sounds relevant. I have read a lot by Professor M Hadjivassiliou which alerted me to this condition. Thank you for sharing this. Yes, I took B12 in spray form with no noticeable effect at all, most things I eat or try have noticeable effects quickly so I think I should be OK- I tried because I read about it here! I'm trying a spoonful of rapeseed (Canola) oil, cold pressed, organic each day ATM, too early to tell if it helps yet (no dramatic effects yet...) and someone said it may not help with a cerebellar problem anyway. I'd be interested to hear if anyone has found it helpful. Big thanks, Marz.

1 like
Reply

Thank you for telling me about this book, I am reading it on Kindle cloud, which means I can have large print, and one column at a time- so as easy to see as possible. It is fascinating, only a third of the way through but I'll get back to you later with any positive results if there are things I can try. It is almost a 'must read. must understand' for many of us, without ataxia.

1 like
Reply

So pleased for you that it is proving an interesting read. I often think if we learn one small thing then the long read has been worthwhile.

I have been a member of Thyoid UK here on HU for seven years. Constantly - daily - we read of the inadequate testing and poor understanding of results and so people remain unwell and receiving drugs they do not need. Sadly we need to read and explore for ourselves ...

1 like
Reply

I found your post very interesting, I am gluten intolerant and ataxic but use a steroid cream for a dermatological condition on my leg. The question arose in my mind whether the cream I use contains gluten. I've raised the issue with my ataxia nurse who said that in her opinion this is extremely unlikely to be the case. Several patients have raised similar issues and after consulting a pharmacist she was told quite categorically that no no UK prescribed medicines contained gluten. However, she did recommend I talk to my local pharmacist to confirm that my particular cream 'Mometasone' is gluten free, and I will.

Reply

I seem to have reaction to corn/maize and also gluten free oats, this is almost unheard of, but I have been here before, with milk, now recognised medically. These contain a different form of gluten. My nephew also has these intolerances but it was picked up on years ago (Parents medics) but he is much younger than me. I only realised early this year. Nurses, Doctors etc will not have heard of it because it has not had any research done on it. (Yet...) Many medicines have cornstarch as a packer in it. Good luck!

Reply

Please supply a link confirming your reference asserting that gluten free oats contain a different form of gluten - I think the coeliac society would be very interested.

Reply

I wrote a lengthy response then decided you may have simply misunderstood? Oats and corn are a different gluten from wheat etc, coeliacs can eat gluten free oats which are packed in a wheat gluten free environment, this is what I have read. I am sensitive to it, regardless. I am not a coeliac. If you are interested, perhaps just google it?

Reply

Oats and corn do not contain gluten, this is an accepted scientific fact, that they are packaged to reflect gluten free status emphasises that they comply with statutory regulations. I invited you to present evidence to substantiate your claim and notice you have chosen not to do so. Please stop spreading this misinformation.

Reply

If they contain no gluten then that is the case. I read they do. A different form. Until I have the time and application to find, you will have to wait, whatever it is that gives me the problems, is is in wheat and other gluten containing foods and also oats, and corn, for me. Or these substances make it all much, much worse. So a common substance that has an identical effect. This page is a wonderful source of information and support, invaluable to me, if I am wrong about gluten being in oats and corn, so be it.

Reply

2/2 "New Study Shows Corn Gluten Similar to Wheat Gluten

“Maize is used as an alternative to wheat to elaborate foodstuffs for celiac patients in a gluten-free diet. However, some maize prolamins (zeins) contain amino acid sequences that resemble the wheat gluten immunodominant peptides… analysis indicated that other zeins contain similar sequences, or sequences that may bind even better to the HLA-DQ2/DQ8 molecules compared to the already identified ones. Results concur to indicate that relative abundance of these zeins,…may be of paramount clinical relevance, and the use of maize in the formulation and preparation of gluten-free foods must be reevaluated…”

Read more at glutenfreesociety.org/is-co...

Also: "Oats contain avenin, which is a protein similar to gluten. ... However problems can occur if oats are produced in the same place as wheat, barley and rye, as the oatscan become contaminated with these other grains. Only uncontaminated oats can be eaten by people with coeliac disease or sensitive to gluten." this protein might be my problem as gluten free oats also damage me. found in: coeliac.org.uk/gluten-free-...

Both reputable sources that substantiate my particular claims, if I choose to repeat my claims, then please accept the evidence as reputable and accurate. There is more- an acknowledgement that some people are sensitive to oats even if packed in a contamination free environment, on the same page. "A very small number of people are still sensitive to uncontaminated oats."

2 likes
Reply

Don't expect quick results,I have been waiting years for a diagnosis?What type of Ataxia is it,will I ever know?

Reply

Ditto

Reply

Me. MRI showed nothing and diagnosed with Idiopathic Cerebellar Ataxia.

1 like
Reply

Hi , My MRI scan shows atrophy and I still have no diagnosis, just a few wrong ones.

Suzie

Reply

I have a bit of cerebellar atrophy of my cerebellum. I've had ataxia over 20 years and it has progressed. I've had genetic tests for the known recessive and dominant ataxias over the years, which were always negative. In 2017, I had genetic exome testing as my neurologist suspected I might have ARSACS (Autosomal Recessive Spastic Ataxia Charlevoix-Saganay), which is a very rare form of recessive ataxia. Although the exome testing was negative for that, a single Niemann Pick C gene was found. Therefore, I had a skin biopsy and then a blood test which confirmed my ataxia is due to Niemann Pick C. It was determined I not only have a single NPC gene, but an unknown variant as well. NPC is a recessive disease which means I got a gene or variant from each of my parents, as you need two genes to have a disease. NPC is extremely rare (mostly effects infants and children that also present with more severe symptoms that lead to death) and adult on-set (my type) is even more rare (I am 64 years old now, diagnosed at 49 years, although I had extremely minor symptoms at 43 years). I only have ataxia symptoms. I never thought in my lifetime I'd find out why I have ataxia! When I was diagnosed, the doctors said I had Sporadic (Idiopathic) Cerebellar Ataxia. Then I found out in 2017 why I had ataxia! I hope you find the reason for yours, 1lazybug!!! My best to you ;o)

3 likes
Reply

You may also like...