Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,110 members•4,689 posts

All posts for April 2017

Episodic ataxia w/ myokymia

Hi my name is Pam and I have been diagnosied with Episodic ataxia w/ myokymia around 10 years ago, but had it since I was 15. All the medicine my Dr has tried...

Hi my name is Pam and I have been diagnosied with Episodic ataxia w/ myokymia ar...

•8 years ago

Non neurological ataxia

As my heading states is there a form of ataxia that wouldn't show up in mris.

As my heading states is there a form of ataxia that wouldn't show up in mris.

•8 years ago

knee replacement with ataxia

I am yet undiagnosed but my neurologist thinks I have sca 6. I have osteoarthritis in my knees and it is becoming more painful to walk. Has anyone with ataxia...

I am yet undiagnosed but my neurologist thinks I have sca 6. I have osteoarthrit...

•8 years ago

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disturbance

Having been diagnosed with progressive cerebellar ataxia 6 months ago last night I awoke 5.30a.m. with my left leg shaking so violently i couldn't move for...

Having been diagnosed with progressive cerebellar ataxia 6 months ago last nig...

•8 years ago

Tiredness

Hi I am 61 and I have have as yet an undiagnosed type of ataxia. It is thought it maybe coeliac ataxia as I was diagnosed with coeliac disease last December. I...

Hi I am 61 and I have have as yet an undiagnosed type of ataxia. It is thought i...

•8 years ago

Holiday accommodation

Is there a list of hotels in the UK which specializes in accommodating for 'us people' with Ataxia e.g. Lifts, wet rooms, Flat grounds etc Any help would be...

Is there a list of hotels in the UK which specializes in accommodating for 'us p...

•8 years ago

Twisted to one side

Hi I'm Louise I have had Friedrich's Ataxia for 19 years I have been i n a wheelchair for 13 years my body is twisting to one side for the last 2 years.

Hi I'm Louise I have had Friedrich's Ataxia for 19 years I have been i n a whee...

•8 years ago

For those of you who are parents to young children with ataxia

At what age were your children diagnosed? what were the initial symptoms that you noticed? what kind of genetics and metabolic tests have they undergone and -...

At what age were your children diagnosed? what were the initial symptoms that yo...

•8 years ago

HOPE

I'm 47 and have cerebellarataxia and an just home from hospital after 15 weeks after getting below knee amputation. I just want to say if I can still walk...

I'm 47 and have cerebellarataxia and an just home from hospital after 15 weeks a...

•8 years ago

Advice/Info Part 2

Sorry its taken so long to reply. Re 'vest' the web site is www. OTvest.com everything you need to know is explained there. As for me, the first time I...

Sorry its taken so long to reply. Re 'vest' the web site is www. OTvest.com ...

•8 years ago

Be the first to reply

I am from the US and O have Sensory Ataxia related to chemotherapy induced Peripheral Neuropathy

Have seen quite of few posts about fatigue. The weird thing is I am three-four months out of cancer treatment and I feel worse now than I did being flooded...

Have seen quite of few posts about fatigue. The weird thing is I am three-four m...

•8 years ago

3yo undiagnosed ataxia

Hi, I've just joined this community. I have a 3yo daughter with global developmental delay and mild hypotonia. since she was a baby, whenever she'd have a...

Hi, I've just joined this community. I have a 3yo daughter with global developme...

•8 years ago

The Menopause affects?

How has the menopause affected you? Do symptoms last or will it get better?I am menopausal, have severe depression with the way my is FA is getting worse ....

How has the menopause affected you? Do symptoms last or will it get better?I am ...

•8 years ago

falling

Can a person with Ataxia pass out very suddenly and with no warning?

Can a person with Ataxia pass out very suddenly and with no warning?

•8 years ago

Not the usual request!

How do I change email address so that daily updates go to the new one? How do I use my name when writing a message rather than come under the name Jeanm? Many...

How do I change email address so that daily updates go to the new one? How do I ...

•8 years ago

How does an ataxia terminal stage look like?

Hi, My father is suffering from SCA. He began to have gait disturbances when he was 40. Now he is 54. He can barely walk on his own. He doesn't use a wheel...

Hi, My father is suffering from SCA. He began to have gait disturbances when he ...

•8 years ago

Mediotech Thera Trainer

Hi, my son has Friedreich's Ataxia and is looking to buy a Mediotech Thera Trainer, and exercise bike accessed from a wheelchair. Does anyone have any...

Hi, my son has Friedreich's Ataxia and is looking to buy a Mediotech Thera Train...

•8 years ago

Exciting news?

So as normal listening to Radio Two on my way to work 😆 and Moira Stewart drops in to the news that 'scientists have made a breakthrough in the search for a...

So as normal listening to Radio Two on my way to work 😆 and Moira Stewart drops...

•8 years ago

Spinocerebellar ataxia with oculomotor apraxia type 2

Hi everyone .. I am new here .. my daughter was diagnosed with Spinocerebellar ataxia with oculomotor apraxia type 2, eight years ago. Is there anyone else...

Hi everyone .. I am new here .. my daughter was diagnosed with Spinocerebellar a...

•8 years ago

new to ataxia

my name is jack, i am 18 years old and have ataxia which quite frankly is rubbish (as you all know) and has ruined my life thus far, it has stopped me from...

my name is jack, i am 18 years old and have ataxia which quite frankly is rubbis...

•8 years ago

Advice/Info and anyone local?

Hullo everyone I expect lots of us have back pain due to our gait ( I walk with my legs quite wide apart not pretty). Can anyone recommend some sort of...

Hullo everyone I expect lots of us have back pain due to our gait ( I walk with ...

•8 years ago

Will I be able to renew my mobility car?

Just gone through the dreaded PIP switch from DLA assessment. Thankfully It went okay and managed to hold on to both my Mobility and care component allowances....

Just gone through the dreaded PIP switch from DLA assessment. Thankfully It went...

•8 years ago

Ireland

Hi all I was wondering if anyone knows of a centre for ataxia in Ireland/Dublin? I would be greatful to hear from you,also my hubby got ataxia 8 yrs he's now...

Hi all I was wondering if anyone knows of a centre for ataxia in Ireland/Dublin?...

•8 years ago

DVLA Decision

Thanks to everyone who replied to my post and it looks like my friend may be in for a long wait after reading the comments. It seems strange that you can...

Thanks to everyone who replied to my post and it looks like my friend may be in ...

•8 years ago

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Recovering H advice I found from a year ago - makes perfect sense to me

"The reason he falls after progress is because the networks in the brain look for a pathway to use from memory, if that one is not available, he has to grow...

"The reason he falls after progress is because the networks in the brain look fo...

•8 years ago

Ginger

Hi all, Im from the US and i have ataxia. I want to try ginger because the medicines haven't been working and I'm getting worse and desperate. I can't walk...

Hi all, Im from the US and i have ataxia. I want to try ginger because the med...

•8 years ago

DVLA Decisions

Hi Can anyone tell me how long it takes for the DVLA to make a decision about a person with Cerebeller Ataxia being able to drive. My friend has suffered with...

Hi Can anyone tell me how long it takes for the DVLA to make a decision about a ...

•8 years ago

Falls with Ataxia

I have Cerebellar Ataxia and I wondered if falls make symptoms worse? I had a bad fall and noticed I am trembling and very slow walking (very shaky) Has anyone...

I have Cerebellar Ataxia and I wondered if falls make symptoms worse? I had a ba...

•8 years ago

PHI

Happy Easter all! Has anyone got any experiences of Permanent Health Insurance (PHI) that they can share? I have had Cerebellar Ataxia for nearly 20 yeas and...

Happy Easter all! Has anyone got any experiences of Permanent Health Insurance (...

•8 years ago

Gym/Swim also Driving

Hi All, I was just wondering if anybody has any experiences or general advice about how using a gym and swimming at early stages may or may not help with any...

Hi All, I was just wondering if anybody has any experiences or general advice ab...

•8 years ago

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