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Update cloudy blind vision
Hi, Update from my previous post I saw my GP last week and told him about my cloudy blind vision episodes. The only suggestion he could think of was a drop in my blood pressure as this happens at night and I have been laying down for a long time. He checked my blood pressure from laying down first and
Hi, Update from my previous post I saw my GP last week and told him about my cloudy blind vision episodes. The only suggestion he could think of was a drop in my blood pressure as this happens at night and I have been laying down for a long time. He checked my blood pressure from laying down first and
ww-wibblywobbly
in
Ataxia UK
5 years ago
Terrible conundrum
I have drug induced cerebral ataxia. Benzos. Been taking them for about 20yrs and am totally addicted. Stopping them and going thru withdrawal is really not a choice. I've read and spoken to drs etc. I could die, suffer excruciating pain, hallucinate, etc. I recently found out all this from a tv
I have drug induced cerebral ataxia. Benzos. Been taking them for about 20yrs and am totally addicted. Stopping them and going thru withdrawal is really not a choice. I've read and spoken to drs etc. I could die, suffer excruciating pain, hallucinate, etc. I recently found out all this from a tv
Carolss
in
Ataxia UK
5 years ago
Cerebellar Atrophy and Gluten Ataxia.
Got a letter from Sheffield Ataxia Center saying the brain imaging confirms a degree of cerebellar atrophy. It also says, this is the typical pattern of what we see with gluten ataxia. Does them mean I have cerebellar atrophy ataxia and gluten ataxia.
Got a letter from Sheffield Ataxia Center saying the brain imaging confirms a degree of cerebellar atrophy. It also says, this is the typical pattern of what we see with gluten ataxia. Does them mean I have cerebellar atrophy ataxia and gluten ataxia.
KiwiBob
in
Ataxia UK
5 years ago
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Cloudy blind vision
Hi all, Just wondering if anyone has experienced this: In the summer I got up in the night for my usual trip to the loo and I had to stop walking as I completely lost my vision. I couldn't see anything and it was like I was in a thick cloud. I stood blinking my eyes for a few minutes and then my vision
Hi all, Just wondering if anyone has experienced this: In the summer I got up in the night for my usual trip to the loo and I had to stop walking as I completely lost my vision. I couldn't see anything and it was like I was in a thick cloud. I stood blinking my eyes for a few minutes and then my vision
ww-wibblywobbly
in
Ataxia UK
5 years ago
This study is
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
Emily_kim
in
Ataxia UK
5 years ago
This study is
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
Emily_kim
in
Ataxia UK
5 years ago
This study is
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
Emily_kim
in
Ataxia UK
5 years ago
This study is
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
This study is an investigation into the response of Tasigna to hereditary cerebellar atrophy in Korea
Emily_kim
in
Ataxia UK
5 years ago
Life is hard
I live in the United States, in the west. I have ataxia due to my cerebellum having atrophy from a virus. I used to run a large farm and a twenty two pivot irrigation system. I drove and worked on all kinds of equipment. I had a motorcycle, four wheeler, and side by side I drove daily doing irrigation
I live in the United States, in the west. I have ataxia due to my cerebellum having atrophy from a virus. I used to run a large farm and a twenty two pivot irrigation system. I drove and worked on all kinds of equipment. I had a motorcycle, four wheeler, and side by side I drove daily doing irrigation
AtaxicFarmer2017
in
Ataxia UK
5 years ago
Diagnosis query
Hi All, I don’t post often but read your comments most days. I have yet to be diagnosed, only with cerebral Ataxia. The doctors, I’ve seen more than one and sometimes abroad, all of them are sure it’s hereditary, even though immediate family have nothing, and I am not convinced. I am 90% sure it’s
Hi All, I don’t post often but read your comments most days. I have yet to be diagnosed, only with cerebral Ataxia. The doctors, I’ve seen more than one and sometimes abroad, all of them are sure it’s hereditary, even though immediate family have nothing, and I am not convinced. I am 90% sure it’s
Cupcake12345
in
Ataxia UK
5 years ago
Interesting to people who live in Wales, and diagnosed with SCA2 or SCA6
https://b3772ef0-ca24-44dc-a571-bbc830c34d9f.filesusr.com/ugd/db12b1_fe10c18550884204971a4df0ff8a8825.doc?dn=Ataxia%20SCA2%20%2B%20SCA6%20MRI%20scan%20opportunity%20 Investigating the use of MRI in understanding disease mechanisms
https://b3772ef0-ca24-44dc-a571-bbc830c34d9f.filesusr.com/ugd/db12b1_fe10c18550884204971a4df0ff8a8825.doc?dn=Ataxia%20SCA2%20%2B%20SCA6%20MRI%20scan%20opportunity%20 Investigating the use of MRI in understanding disease mechanisms
wobblybee
in
Ataxia UK
5 years ago
Doctor appointment
Hi. I’m looking online for information about cerebellum ataxia. I was diagnosed back in May of this year. I avoid the internet when dealing with health issues. My neurologist referred me to another neurologist out of Rush University, Chicago, Illinois. I’m 49 and have been relatively healthy. I used
Hi. I’m looking online for information about cerebellum ataxia. I was diagnosed back in May of this year. I avoid the internet when dealing with health issues. My neurologist referred me to another neurologist out of Rush University, Chicago, Illinois. I’m 49 and have been relatively healthy. I used
Jessie70
in
Ataxia UK
5 years ago
Looking for CANVAS sufferers
Right now she is experiencing imbalance, lack of sensation in her arms, legs and face,
ataxic
gait
, headaches, lethargy, dry skin and mouth, cold limbs, pain in her legs at night, some vagueness when interacting followed by moments of total clarity, falls, trouble gripping or holding objects and digestive
Right now she is experiencing imbalance, lack of sensation in her arms, legs and face,
ataxic
gait
, headaches, lethargy, dry skin and mouth, cold limbs, pain in her legs at night, some vagueness when interacting followed by moments of total clarity, falls, trouble gripping or holding objects and digestive
17KGB
in
Ataxia UK
5 years ago
Today's supplement of interest. L-serine.
First I want to say thank you to the forum member Blueginger for bringing this supplement to my attention. Thank you :D - Those who are familiar with my posts on HU know that I am a big proponent of supplements as a means to help slow the progression of the genetic forms of Spinocerebellar Ataxia namely
First I want to say thank you to the forum member Blueginger for bringing this supplement to my attention. Thank you :D - Those who are familiar with my posts on HU know that I am a big proponent of supplements as a means to help slow the progression of the genetic forms of Spinocerebellar Ataxia namely
sunvox
in
Ataxia UK
5 years ago
Oxford's Neurogenetics Clinic
Hi there, to cut a long story cut extremely short, my mother (55 years old) has been under Neurology since November 2018 and was found to have "severe and significant cerebellar atrophy". Her diagnosis is pending, but it is extremely likely she has an Ataxia of some description (AFTER 2 years of being
Hi there, to cut a long story cut extremely short, my mother (55 years old) has been under Neurology since November 2018 and was found to have "severe and significant cerebellar atrophy". Her diagnosis is pending, but it is extremely likely she has an Ataxia of some description (AFTER 2 years of being
RN12120
in
Ataxia UK
5 years ago
Fascinating Podcast
Below is a link to the Doctor's Farmacy and a podcast regarding links between our gut microbiome and diseases such as ALS, MS, Parkinsons and I believe Ataxia. Long but worth a listen and much food for thought. https://shows.pippa.io/the-doctors-farmacy/episodes/have-we-discovered-the-cause-of-alzheimers-parkinsons-and-al
Below is a link to the Doctor's Farmacy and a podcast regarding links between our gut microbiome and diseases such as ALS, MS, Parkinsons and I believe Ataxia. Long but worth a listen and much food for thought. https://shows.pippa.io/the-doctors-farmacy/episodes/have-we-discovered-the-cause-of-alzheimers-parkinsons-and-al
nycgeordie
in
Ataxia UK
5 years ago
Exercise ideas to share
Hi all, a couple of weeks ago we had a friend come to stay with us, this friend used to be my physiotherapist until he moved away. So whilst he was here he did some exercise sessions with me. He has left me a program of exercises to do every day to particularly strengthen the back of my thighs and
Hi all, a couple of weeks ago we had a friend come to stay with us, this friend used to be my physiotherapist until he moved away. So whilst he was here he did some exercise sessions with me. He has left me a program of exercises to do every day to particularly strengthen the back of my thighs and
ww-wibblywobbly
in
Ataxia UK
5 years ago
Son with Ataxia
My son is 7 years old and has been dealing with a walking disorder that they have yet to actually diagnose but they are leaning towards cerebral ataxia. He showed no signs until September 2018. Could anyone recommend a vest that could possibly help his mobility?
My son is 7 years old and has been dealing with a walking disorder that they have yet to actually diagnose but they are leaning towards cerebral ataxia. He showed no signs until September 2018. Could anyone recommend a vest that could possibly help his mobility?
sharpdesigns16
in
Ataxia UK
5 years ago
New to Friedreich's Ataxia
I'm new here..my nearly 13 yo son has just been diagnosed with FA. He was diagnosed as dyspraxic 5 years ago but became increasingly ataxic past 18 months and developed severe scoliosis for which he is waiting for an op date at Alderhey. The neurologist told me the FA diagnosis over the phone so we
I'm new here..my nearly 13 yo son has just been diagnosed with FA. He was diagnosed as dyspraxic 5 years ago but became increasingly ataxic past 18 months and developed severe scoliosis for which he is waiting for an op date at Alderhey. The neurologist told me the FA diagnosis over the phone so we
crackerwest
in
Ataxia UK
5 years ago
Anti-Purkinge
For five days last week I had IVIg treatment I have to have blood test in August to see if it worked on Anti-Purkinge and if so the treatment will be repeated. I have Cerebella Atrophy associated with Anti-Purkinge it will take 4-6weeks to work. Has anyone else undergone this treatment and if so was
For five days last week I had IVIg treatment I have to have blood test in August to see if it worked on Anti-Purkinge and if so the treatment will be repeated. I have Cerebella Atrophy associated with Anti-Purkinge it will take 4-6weeks to work. Has anyone else undergone this treatment and if so was
Jacqui-A
in
Ataxia UK
5 years ago
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