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?
MRI of brain - cerebellum atrophy or normal? - Ataxia UK
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
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.
I was hoping for this too, but have been off Gluten since March without change.
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 ...
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.
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.
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 ...
Hello, Marz, I am still slowly reading the book! Lots of lightbulb moments. I have tried several supplements and definitely was more alert but also became or was intolerant of soy which I also started having at the same sort of time. The ensuing gastritis from that intolerance caused me to stop the supplements. Starting again now, one at a time! Hoping for more improvement now soy is not causing problems! Thank you again for sharing the book and therefore some real and useful understanding, with us.
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.
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!
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.
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?
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.
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.
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."
Don't expect quick results,I have been waiting years for a diagnosis?What type of Ataxia is it,will I ever know?
Me. MRI showed nothing and diagnosed with Idiopathic Cerebellar Ataxia.
Hi , My MRI scan shows atrophy and I still have no diagnosis, just a few wrong ones.
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)
YES - you need 2 genes to have the disease... but here I am with only 1 aberrant gene for Friedrich’s Ataxia and I have ALL the symptoms! My neurologist and the geneticists disagree on this. The geneticists say I cannot possibly have the disease and yet it seems I do. So they are calling it “Idiopathic Cerebellar Ataxia “. If you have only 1 aberrant gene you are a “carrier “, not a victim. SUPPOSEDLY.
Hmmmm, I was positive for Niemann Pick C (NPC) disease with a single NPC gene. InitIally, my neurologist said I'd need two NPC genes to realize the disease. Then he talked with other neurologists who were experts in NPC and they said I should have a skin biopsy followed by a blood test (the gold standard way of diagnosing NPC). It came back POSITIVE for NPC. It was determined that I not only had a single NPC gene, but an UNKNOWN VARIANT as well!Therefore, my ataxia is due to NPC disease. Maybe, in your case, you have an unknown variant as well, if that's even possible? That is true that if you only have a single gene you'd be a carrier (usually). I can only tell you what I was told in my case, as this is so confusing to me! My best to you...,;o)
Sorry I have only just read this, but me too. It was only after a further MRI oh and then a wait for someone to actually go through the results with me that they found a shadow on the MRI of my cerebellum but nothing that made me think how do I get told this is now my life. With me it was the electrodes that they put on my legs that showed the signals from the brain to the rest of my body had broken down.
My condition is not genetic so I try really hard to overcome what I can no longer do naturally.
Anyway I should have read what you said before as it is always strange when someone picks up on your old posts.
I was politely asked if I wanna see the scan and I refused. I know very well what doesn't work, my walking, my gait is wider, my balance non-existant, in other words f*cked, what is there to see...?One day, I WILL NOT REFUSE, when they can fix it, WILL BE THE FIRST TO PROUDLY SEE IT, even put in on facebook...
I have had several MRI scans and it depends which consultant gives results. My first diagnosis in 2002 was 95% Not MS but.. Cerebellar Degeneration. Further results have shown no further degeneration and in fact one neurologist told me the shrinkage was no different to most people my age. I have been a patient at Ataxia accredited clinic in London and had genetic tests but nothing definitive has been found, I remain Idiopathic Cerebellar Ataxia. This is not unusual . I hope this helps and I wish you well. Its hard to accept [yes even after all these years]
I have had MRI scan in the pass which showed no damage to my cerebellum but I still had Ataxia symptoms.
I just had a scan done yesterday morning down in Sheffield Ataxia Center. I am waiting to see how that turns out.
The MRI scanner in Sheffield is different to normal hospital MRI scanners. It can see into the brain a show detailed Ataxia damage.
Sheffield like 2 more hospitals in this country are the best for ataxia diagnosis North Cumberland and. Oxford. I no need say any more with pioneers examining different types of Ataxia and feel eased.