Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,037 members • 4,576 posts

All posts for October 2019

TMS

Had my TMS evaluation at the lab in Boston and unfortunately, or maybe not, I'm not a candidate. The neurologist I consulted with was excellent and gave me a...

Had my TMS evaluation at the lab in Boston and unfortunately, or maybe not, I'm ...

•5 years ago

B12

Does anyone have info on b12.I have ataxia but been looking into b12 deficency & have so many of the symptoms.& after reading so much about it says that some...

Does anyone have info on b12.I have ataxia but been looking into b12 deficency ...

•5 years ago

https://fragilexnewstoday.com/2019/10/29/grip-test-helps-identify-monitor-fragile-x-tremor-ataxia-syndrome-in-adults-study-suggests/

Not all Ataxias can be be identified by a blood test, this is hopeful news for a specific type.

Not all Ataxias can be be identified by a blood test, this is hopeful news for a...

•5 years ago

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Fish and Rice

Fish and rice. Doubtless like many of you my ataxia symptoms are affected by the foods I eat. Fish and rice, not necessarily eaten together, result in a...

Fish and rice. Doubtless like many of you my ataxia symptoms are affected by th...

•5 years ago

I have Ataxia

Dr Hadjivassiliou has confirmed that I have Ataxia.

Dr Hadjivassiliou has confirmed that I have Ataxia.

•5 years ago

Frosty Morning

Touch of frost this morning but now the ☀️ is up and blue skies, looks like it’s going to be a lovely day. Stay safe & have a good one👍

Touch of frost this morning but now the ☀️ is up and blue skies, looks like it’...

•5 years ago

Big day tomorrow

I have traveled down to Sheffield from Scotland today. I am being seen at Sheffield Ataxia Center tomorrow.

I have traveled down to Sheffield from Scotland today. I am being seen at Sheffi...

•5 years ago

Its here!!

So.... After a year og asking to be referred for a diagnosis.. Its here! Neurology took 7 months to see me only to conclude from reflex tests that I'm...

So.... After a year og asking to be referred for a diagnosis.. Its here! Neurolo...

•5 years ago

Small recommendation

Hi to everyone hope you are well, I don't know if everybody already uses a ventilator. It is absolutely amazing it allows me to eat a variety of foods without...

Hi to everyone hope you are well, I don't know if everybody already uses a vent...

•5 years ago

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Tremors

Morning all, does anyone have tremors in the tongue? Mine are happening more 🙄

Morning all, does anyone have tremors in the tongue? Mine are happening more 🙄

•5 years ago

Friday was Nice But

Day out with brother on Friday. Started off good with trip to Kielder, through to Hawick and Scots view......then I woke up in the back of an ambulance🙄...

Day out with brother on Friday. Started off good with trip to Kielder, through t...

•5 years ago

Software to the rescue......?

Maybe. https://www.thetimes.co.uk/edition/news/dna-word-processor-brings-hope-of-cures-for-genetic-dieases-3p05vv8hj

Maybe. https://www.thetimes.co.uk/edition/news/dna-word-processor-brings-hope-o...

•5 years ago

What's next?

Hi I hope everybody is doing well... I am fairly new to sca 1 and not as experienced. I am only 18 years of age and I have her ataxia since I was 12. I am...

Hi I hope everybody is doing well... I am fairly new to sca 1 and not as experie...

•5 years ago

Can’t Sleep Again

Hit the sack about 10.15pm feeling really tired, wakened after only a couple of hours sleep, been dozing on and off since. I don’t sleep during the day so it’s...

Hit the sack about 10.15pm feeling really tired, wakened after only a couple of ...

•5 years ago

can Ataxians donate their organs?

Hi everyone , I am just curious about whether we can donate organs or not? What do you all think? thanks

Hi everyone , I am just curious about whether we can donate organs or not? What ...

•5 years ago

Exercises to ease dystonia?

Left-hand has started cramping (rather painfully) for last 2 weeks or so. Now so bad that I'm typing this (very slowly) with one hand. Expect GP will have a...

Left-hand has started cramping (rather painfully) for last 2 weeks or so. Now so...

•5 years ago

A small fundraising event

On Saturday 7th December 2019, I have organised a concert of "Pipe Organ Music" at St. Denys parish church, here in Sleaford, Lincolnshire. The aim is to raise...

On Saturday 7th December 2019, I have organised a concert of "Pipe Organ Music" ...

•5 years ago

Support when it’s needed most

In yesterday’s Sunday Telegraph Magazine (Stella), there was an article about a lady whose husband had been diagnosed with SCA6. We know that not everyone is...

In yesterday’s Sunday Telegraph Magazine (Stella), there was an article about a ...

•5 years ago

Trehalose, trehalose, trehalose. YUM !! :)

So, there is a gentleman who inspired my regimen. He has Huntington's Disease, but he is now almost 20 years beyond when his mother first had symptoms, and he...

So, there is a gentleman who inspired my regimen. He has Huntington's Disease, ...

•5 years ago

Yummy🤗

Breakfast Cup of Tea & Porridge...... But......Lunch, Wow! Diced chicken, chopped red pepper, chopped onion, mushrooms.... Then all added to Black Bean Sauce...

Breakfast Cup of Tea & Porridge...... But......Lunch, Wow! Diced chicken, choppe...

•5 years ago

Vocal changes

Since my diagnosis I have noticed my voice changing. I am definitely slightly slurred but I’m doing vocal exercises to improve this. What’s really annoying me...

Since my diagnosis I have noticed my voice changing. I am definitely slightly sl...

•5 years ago

Cancer

My husband has had to mole removed and it’s cancerous I’m so scared

My husband has had to mole removed and it’s cancerous I’m so scared

•5 years ago

1st treatment for friedrichs ataxia

https://www.reatapharma.com/press-releases/reata-announces-positive-topline-results-from-the-moxie-registrational-trial-of-omaveloxolone-in-patients-with-friedr

https://www.reatapharma.com/press-releases/reata-announces-positive-topline-resu...

•5 years ago

Current bio markers for Spinocerebellar Ataxias

https://scasource.net/2019/08/09/snapshot-what-is-a-biomarker/

https://scasource.net/2019/08/09/snapshot-what-is-a-biomarker/

•5 years ago

Article in Brain and Life magazine

https://www.brainandlife.org/articles/inherited-ataxias-are-rare-genetic-conditions-that-cause-problems-with/

https://www.brainandlife.org/articles/inherited-ataxias-are-rare-genetic-conditi...

•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....

Hi. I’m looking online for information about cerebellum ataxia. I was diagnosed ...

•5 years ago

The Common Cold and Ataxia

Hi, Is it me or does the common cold knock you guys out too. I can get through any amount of pain but something simple like a cold knocks me out. My Ataxia...

Hi, Is it me or does the common cold knock you guys out too. I can get through...

•5 years ago

Thought I’d lost This

Thought I’d lost this, not seen it for years😳 Got it safely tucked away inside my wallet now...Brother found it whilst sorting out my DVD’s for me.

Thought I’d lost this, not seen it for years😳 Got it safely tucked away inside ...

•5 years ago

Crap

I hate Ataxia it’s not far Whatever happened to us Why

I hate Ataxia it’s not far Whatever happened to us Why

•5 years ago

Just a Wiggle

Watching the football on TV (where else😂😂) I keep glancing at my toes convincing myself I’d just seen them or one of them move. But those pesky little...

Watching the football on TV (where else😂😂) I keep glancing at my toes convinc...

•5 years ago

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