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Ataxic gait
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What will happen next as in the steps to take after diagnosis?
Dears, I am still waiting for feedback regarding the last MRI I had over a fortnight ago and have an appointment to see a doctor next week. I want to know whether I inform them what I need, or the doctor will tell me or the Neurologist will? I find that the lengthy time between meetings/appointments
Dears, I am still waiting for feedback regarding the last MRI I had over a fortnight ago and have an appointment to see a doctor next week. I want to know whether I inform them what I need, or the doctor will tell me or the Neurologist will? I find that the lengthy time between meetings/appointments
PGee
in
Ataxia UK
8 years ago
Ataxia with a baby
I have spinocerebellar ataxia type 2 (sca2) and I'm doing IVF with PGD testing to have a baby without the condition. Is there anyone here that has a baby but has ataxia? How do you go about with the baby if you're in a wheelchair? Also you can't really carry a baby around with balance issues. What
I have spinocerebellar ataxia type 2 (sca2) and I'm doing IVF with PGD testing to have a baby without the condition. Is there anyone here that has a baby but has ataxia? How do you go about with the baby if you're in a wheelchair? Also you can't really carry a baby around with balance issues. What
Caraxxo
in
Ataxia UK
8 years ago
Newly nearly diagnosed waiting for further confirmation - question re medication please.
I have read the Ataxia site that says there is no cure, but there are tablets that can help various aspects of one's symptoms. My question is that at the moment the symptoms are livable by that I mean that I can do things, even though I am loosing sensation and have the shakes upon occasion and am uncertain
I have read the Ataxia site that says there is no cure, but there are tablets that can help various aspects of one's symptoms. My question is that at the moment the symptoms are livable by that I mean that I can do things, even though I am loosing sensation and have the shakes upon occasion and am uncertain
PGee
in
Ataxia UK
8 years ago
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Ataxia sca3
Hello all im sophie 32 i found my biological father back in november but he had passed from ataxia at age 55 his brother and niece have also passed and nephew has it , my fathers oldest sun doesnt for 2 yrs i have had pain in my ankles had tests for diabetes artritis etc full blood count gone back compalining
Hello all im sophie 32 i found my biological father back in november but he had passed from ataxia at age 55 his brother and niece have also passed and nephew has it , my fathers oldest sun doesnt for 2 yrs i have had pain in my ankles had tests for diabetes artritis etc full blood count gone back compalining
sophie83
in
Ataxia UK
9 years ago
Msa c
Hi, just been to see neurologist with my husband after a 9month app, he had a dat scan 6 month ago and went to get results, he has been told he has multiple system atrophy with cerebella ataxia.(MSA C) Does any one know about the progression of this?when I asked if it was an aggressive or rapid progression
Hi, just been to see neurologist with my husband after a 9month app, he had a dat scan 6 month ago and went to get results, he has been told he has multiple system atrophy with cerebella ataxia.(MSA C) Does any one know about the progression of this?when I asked if it was an aggressive or rapid progression
Edward1958
in
Ataxia UK
9 years ago
Ms
Hi i am new here,i have Spinal Cerebellar Ataxia i have had it for almost 20yrs,i was just wondering how people here have got on with their P. I. P. claim,i am at the moment on highest award DLA and am about to fill in my claim form and feeling very worried and stressed,so was wondering if there are
Hi i am new here,i have Spinal Cerebellar Ataxia i have had it for almost 20yrs,i was just wondering how people here have got on with their P. I. P. claim,i am at the moment on highest award DLA and am about to fill in my claim form and feeling very worried and stressed,so was wondering if there are
TELEEN
in
Ataxia UK
9 years ago
Any ideas please?
I have started leaning for extra support and balance and I am doing it a lot in my workshop when I work my clay. I am using the edge of the table for added support. My neuro-physio wants me to use my knees instead and has suggested I try and get a knee height support bar. A friend has very sweetly said
I have started leaning for extra support and balance and I am doing it a lot in my workshop when I work my clay. I am using the edge of the table for added support. My neuro-physio wants me to use my knees instead and has suggested I try and get a knee height support bar. A friend has very sweetly said
Litty
in
Ataxia UK
9 years ago
Ataxia to Atrophy
Hi all My neurologist diagnosed Progressive cerebellar Ataxia about 8 or 9 months ago. Thanks to the info pack and Ataxia UK they recommended seeking an appointment at one of the specialist centres (in my case at UCLH London (Dr P Giuntis team) Both neurologists and GP agreed and an appointment was made
Hi all My neurologist diagnosed Progressive cerebellar Ataxia about 8 or 9 months ago. Thanks to the info pack and Ataxia UK they recommended seeking an appointment at one of the specialist centres (in my case at UCLH London (Dr P Giuntis team) Both neurologists and GP agreed and an appointment was made
cymruralf
in
Ataxia UK
9 years ago
ataxia, as a way of life, ugh
Yesterday, I went to my neuro and it seems the IVIg has cleared up my weird antibody issue ( thought to bring on the ataxia), and I no longer get long-term hives (another symptom), but the ataxia remained and is advancing. My neuro thinks some antibodies are still around. They are going on that. Nevertheless
Yesterday, I went to my neuro and it seems the IVIg has cleared up my weird antibody issue ( thought to bring on the ataxia), and I no longer get long-term hives (another symptom), but the ataxia remained and is advancing. My neuro thinks some antibodies are still around. They are going on that. Nevertheless
neta
in
Ataxia UK
9 years ago
Friedrichs ataxiapotential new treatment
Hi everyone as u may or may not know my 12 year old son was diagnosed with friedrichs ataxia 6 months ago Yesterday I was checking Internet for any new treatment and found this Scientists find potential treatment for Friedreich’s ataxia Feb 16, 2016 DALLAS – Feb. 16, 2016 – Researchers at UT Southwestern
Hi everyone as u may or may not know my 12 year old son was diagnosed with friedrichs ataxia 6 months ago Yesterday I was checking Internet for any new treatment and found this Scientists find potential treatment for Friedreich’s ataxia Feb 16, 2016 DALLAS – Feb. 16, 2016 – Researchers at UT Southwestern
simon111
in
Ataxia UK
9 years ago
Stem cells
It seems that stem cell therapy seems to be all the rage at the moment. Is there anywhere in the UK doing any work in this area? Specifically MS OR Ataxia but, anything more would be useful.
It seems that stem cell therapy seems to be all the rage at the moment. Is there anywhere in the UK doing any work in this area? Specifically MS OR Ataxia but, anything more would be useful.
scruffycat
in
Ataxia UK
9 years ago
DRIVING LICENCE
My licence expired at the end of last March (I have been on a 3 year licence since becoming an insulin dependent diabetic) and I had applied for a replacement last February and completed the medical questionnaire, including details of my ataxia which I had included on every application since being diagnosed
My licence expired at the end of last March (I have been on a 3 year licence since becoming an insulin dependent diabetic) and I had applied for a replacement last February and completed the medical questionnaire, including details of my ataxia which I had included on every application since being diagnosed
robo1
in
Ataxia UK
9 years ago
My moods
I am 44 years old and I can hardly walk anymore I got told I had Ataxia a couple of years ago my mum got told back in the 1960s by her local hospital that she had ms but she had a mri scan about 4 years ago at my neuron hospital that she hasn't got MS but the same thing as me. My oldest son had been
I am 44 years old and I can hardly walk anymore I got told I had Ataxia a couple of years ago my mum got told back in the 1960s by her local hospital that she had ms but she had a mri scan about 4 years ago at my neuron hospital that she hasn't got MS but the same thing as me. My oldest son had been
Jim95
in
Ataxia UK
9 years ago
Is seeing a Neurologist on a regular basis essential?
I was diagnosed with Cerebellar atrophy in 2010 and the last time I had seen a Neurologist was in 2011. I was also a regular member of the West of Scotland Ataxia group which I found to be very interesting and helpful. My ataxia has progressed slowly since then and I now find that I accept my condition
I was diagnosed with Cerebellar atrophy in 2010 and the last time I had seen a Neurologist was in 2011. I was also a regular member of the West of Scotland Ataxia group which I found to be very interesting and helpful. My ataxia has progressed slowly since then and I now find that I accept my condition
Hidden
Volunteer
in
Ataxia UK
9 years ago
Spinocerebellar ataxia type 6
Hi ev1 I am desperate for help. And advice...my mum has sa6 and I have been diagnosed for 2 years I am 43, I get so much pain in my legs especially my left leg my knee down to my foot mainly...I do drop things I can't walk in a straight line half the time,I do get dizzy spells,but my main issue is I
Hi ev1 I am desperate for help. And advice...my mum has sa6 and I have been diagnosed for 2 years I am 43, I get so much pain in my legs especially my left leg my knee down to my foot mainly...I do drop things I can't walk in a straight line half the time,I do get dizzy spells,but my main issue is I
kareen
in
Ataxia UK
9 years ago
What about our partners / carers?
My wife Jenny, (she does not want to hide behind the title - the wife) has been lookingh at my blog site https://ataxiafightback.wordpress.com and said she would like to see a page or posts for those who live with an ataxia sufferer. How are they supposed to cope? Do they have a sense of loss, of anger
My wife Jenny, (she does not want to hide behind the title - the wife) has been lookingh at my blog site https://ataxiafightback.wordpress.com and said she would like to see a page or posts for those who live with an ataxia sufferer. How are they supposed to cope? Do they have a sense of loss, of anger
nigelrheath
in
Ataxia UK
9 years ago
Thank you for the welcome.
Diagnosis based on
ataxic
gait
and fatigue ++ after any exercise. Thank you have bought a spinning cycle to keep on excercing. So pleased to have met up with this group.
Diagnosis based on
ataxic
gait
and fatigue ++ after any exercise. Thank you have bought a spinning cycle to keep on excercing. So pleased to have met up with this group.
Pec2884
in
Ataxia UK
9 years ago
Friedreichs ataxia
My husband has had FA for over 25years, he recently had a chest infection and now he is unable to speak clearly (even I can't understand what he is trying to tell me) and can't hold himself up in a chair. I would like to know if anyone else has experience anything similar, I am really worried about him
My husband has had FA for over 25years, he recently had a chest infection and now he is unable to speak clearly (even I can't understand what he is trying to tell me) and can't hold himself up in a chair. I would like to know if anyone else has experience anything similar, I am really worried about him
Sammy418
in
Ataxia UK
9 years ago
When is it MSA instead of idiopatic cerebellar ataxia?
MSA stands for Multiple System Atrophy and many of my systems have atrophied but other people with ataxia also have many different problems.
MSA stands for Multiple System Atrophy and many of my systems have atrophied but other people with ataxia also have many different problems.
klazien
in
Ataxia UK
9 years ago
A diagnosis
On Friday, I received a letter from my neurologist with the results of my genetic blood test. It has been confirmed that I have type 2 SCA and that I inherited this from my mother (I'm adopted so knew very little family history only that they thought she had MS and died in her early 50's). Whilst the
On Friday, I received a letter from my neurologist with the results of my genetic blood test. It has been confirmed that I have type 2 SCA and that I inherited this from my mother (I'm adopted so knew very little family history only that they thought she had MS and died in her early 50's). Whilst the
Jay1972
in
Ataxia UK
10 years ago
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