Professor Marios Hadjivassiliou's talk on the causes of Ataxia

[@kenngordon]

We are very lucky my family was referred to Marios and my wife and her sons along with our grandson were all diagnosed with spino-cerebellar Ataxia type 13. Whilst this is a rare form of ataxia Marios and his staff were able to identify this and even followed a genetic connection to another family in france. My family are now on a course of treatment. This would not have happened without a full diagnosis. Previously they were told they were "Clumbsy" and or just "Stupid". To have even just a name for their condition was life altering. and we thank Marios and all his team for their continued help and support. I know there are many other families here in the UK who Marios has also helped the NHS should allow greater funding to his department and better knowledge on this condition should be sent out to GP's and even to school nurses to enable early diagnosis and treatment. Thank you Marios

[@chrisblue4685]

Manny thanks

[@chrisblue4685]

❤

[@chrisblue4685]

Manny thanks mri scanner sone as possible under 10 years listen to maros hadjivasible Sheffield

[@jimmcconnell7328]

I don’t understand why gluten is a problem for those with ataxia. This was also mentioned in another video on ataxia where a patient was told to eliminate gluten. Is there research on this?

[@mymusixrebrn]

I live in US, my daughter has what we believe is Gluten Ataxia, but none of the doctors here in the 2 states I have lived in will give serious consideration to Gluten as the cause of her ataxia, despite her testing positive for genetic marker and fecal antibodies. How could I possibly write to Dr. Hadjivassilou for his expertise?

[@kenngordon]

+mymusixrebrn I dont know if He is able to help people outside the UK However I am sure your Dr could write to Marios at Neurological Sciences Dept, The Royal Hallamshire Hospital, Jessop Road, Sheffield, UK.

[@DNAConsultingDetectives]

+mymusixrebrn , I was diagnosed with gluten ataxia in Jan 2009 in the US. It's changed my life. I was essentially bed bound most of 2008. After going 100% gluten free I was significantly improved in both movement (ataxia) and cognition. I also needed Rx probiotics to heal my guts. That was the tipping point. I have most of my life back now. However because I was over 50 years old at diagnosis, I'll never get 100% back to normal. The sooner your daughter goes gluten free the better. A diagnosis may never happen as most US doctors don't acknowledge it ...yet. My neuro was not convinced till he chatted with my gastro (I never had gut symptoms) and saw the tremendous improvement. Now he send's patients who look like they may have MS but MRI's are normal, to see a Gastroenterologist. I would suggest focusing on whole unprocessed foods vs gluten free versions of processed foods. Shop the perimeter of the grocery store. Consider cutting out dairy for the first six months too. How old is your daughter? The sooner this happens the better. My gastro communicated with Prof. Hadjivassilou to get a likely prognosis for me.

[@JoeGtars13]

I was diagnosed with gluten ataxia last fall. Very sporadic symptoms that are decreasing in intensity when at their worst. However they are still very distressing. Why do you mention giving up dairy as well? Thank you for your response.

[@DNAConsultingDetectives]

Once I recognized the effect of gluten on my health, I started to become suspect of other foods and gave serious thought to a diet that was "clean". I eliminated several foods that communing cause problems and dairy is particularly closely related to Celiac Disease. So I gave up dairy to see what would change. I was able to get off of three different asthma medications. I sometimes eat small amounts of dairy, but it always causes me breathing problems. If your gluten free diet is very strict and you're still not fully recovering, try some good quality probiotics. It's almost always necessary for Celiacs to take them for extended periods to repopulate the gut bacteria. That's what my GI doctor had me do. Within a month it made a huge difference for me. Gluten is never tempting for me as I know it starts the inflammatory process all over again in my guts and likely my brain. I'm bed bound for up to six weeks if I get cross-contamination. Who wants that. I wish you the best in your journey. Take care.

[@karishort7561]

@@JoeGtars13 I am curious to know if the ataxia comes and goes...

[@joshua2222ful]

I had been in a mainly gluten free diet as my husband was gluten sensitive. I was diaganosed two years later after eating gluten with late onset degenerative cerrabellum disorder. No genetic testing done mri nothing picked up no brain stem nor cerrabellum atrophy and nerve testing normal. Nothing like this in my family I’m not a big drinker no drugs as such. So I’m I. The too hard basket and no suggestions from medical professionals. I’m I. New Zealand. What are your thoughts on stem cell therapy? Any suggestions?

[@karennuttall7059]

😊

[@ΝτιΟικ]

I am from Greece and I have cerebellar atrophy since I was 19. After few years I was diagnosed with mild SCA with early beginning. I guess ı have gluten ataxia. What should I do? The doctors here are not specialized in it.

[@AtaxiaUKonline]

Hello there, Sorry to hear about your difficult situation. You can email our Helpline for some advice on this: [e-mail]

[@ΝτιΟικ]

@@AtaxiaUKonline Thank you sir, but I live in Greece. I join in ataxia groups in social media,such as ataxia support group.I am glad for the professor Hadjivassiliou, he is Greek!

[@ΝτιΟικ]

May I ask, is gluten ataxia changeable throughout the years? My ataxia is unchangeable (21 years), but certainly the consequences of it (balance, coordination, fine motor skills) are too hard

[@mrbombastic2485]

I had a long term exposure to carbon monoxide and have symptoms of ataxia, balance and unilateral limb disfunction. Have you heard of this cause/