Posts - Ataxia UK | HealthUnlocked

Ataxia UK

4,028 members • 4,569 posts

All posts for February 2018

Phase 3 trial of acetyl-DL-leucine for CA and SCA.

Running out of time so have to just post links and come back to this later, but this looks very interesting: - Acetyl-DL-leucine improves gait variability in...

Running out of time so have to just post links and come back to this later, but ...

sunvox

•6 years ago

20 Replies

Attaxia

Hi all been reading some of your posts. I've had spinal cerabella ataxia for twelve years was diagnosed when I was 50. Stopped playing football at 32 always...

Hi all been reading some of your posts. I've had spinal cerabella ataxia for twe...

Pekingese2

•6 years ago

5 Replies

I am new here..

I am 31 years old man. I Suffered lithium toxicity which led to Polyradiculoneuropathy.. Named... Acute Inflammatory Demyelinating Polyradiculoneuropathy.. in...

I am 31 years old man. I Suffered lithium toxicity which led to Polyradiculoneur...

Skumar0778

•6 years ago

1 Reply

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Thiamine and Mannitol???

Obviously everyone is VERY different. I have SCA1 and love to read Joe's tips but they do not seem to work for me so far and I am getting worse and I shake...

Obviously everyone is VERY different. I have SCA1 and love to read Joe's tips bu...

Litty

•6 years ago

25 Replies

Undiagnosed condition

My husband now cannot walk at all.. his legs are very stiff. Sadly his arms are also going the same way. He has no balance what so ever. He is 68 and this...

My husband now cannot walk at all.. his legs are very stiff. Sadly his arms are ...

willywade

•6 years ago

7 Replies

My experience with extreme tirdness

I have ataxia SCA1 I lost 18 stones in weight .I develop AF heart condition which was extremely painful until I had the operation. I finding now my hands r...

I have ataxia SCA1 I lost 18 stones in weight .I develop AF heart condition whic...

Jobbo16

•6 years ago

3 Replies

CA by "bad luck"!

Hello! I havent posted a while.. So, I did some tests and resoltst came. ALL of my tests were good; just like "normal" person.. Dr. said that I have sporadic...

Hello! I havent posted a while.. So, I did some tests and resoltst came. ALL of ...

boki

•6 years ago

2 Replies

Exercise rescues SCA1 mice.

So I came across this study years ago and forgot about it. Long before I got to where I am today in terms of a complex regimen I was already exercising...

So I came across this study years ago and forgot about it. Long before I got to...

sunvox

•6 years ago

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Breathing

Does any body know if ataxia effects breathing and pains in chest and back

12taz

•6 years ago

2 Replies

Newly diagnosed

Hi, I have recently been diagnosed with Ataxia 3. I’m a 33 year old nurse and would love to hear from people living with the condition x

Hi, I have recently been diagnosed with Ataxia 3. I’m a 33 year old nurse and wo...

EmWakie

•6 years ago

15 Replies

Money savers

Just got my new electric wheel chair. It's very good but I think I should have L plates!! I will have to get busy with the Polifilla to repair the damaged...

Just got my new electric wheel chair. It's very good but I think I should have ...

tedjohnson

•6 years ago

6 Replies

Drinking coffee

Hi everyone I haven't posted for a while. But I was kind of wondering if you can drink coffee with ataxia and high sugar levels.

Hi everyone I haven't posted for a while. But I was kind of wondering if you ca...

AnneMenzies

•6 years ago

4 Replies

Trelahose

How much Trelahose should I take each day? can anyone advise please. Thank you x

How much Trelahose should I take each day? can anyone advise please. Thank you x...

stjamesangel

•6 years ago

2 Replies

Trehalose Sugar Supplement

So I have started taking both Trehalose 100 g daily and Tru Niagen 500 mg x 2 daily. Reason for this post is to ask if there is a cheaper and effective...

So I have started taking both Trehalose 100 g daily and Tru Niagen 500 mg x 2 da...

mpagganwala

•6 years ago

1 Reply

SCA type 2

Hello every one, My Name is vinu radhakrishnan from india, i am 33 years old boy. I have SCA2 type,Today i consult my doctor for regular check up.I am taking...

Hello every one, My Name is vinu radhakrishnan from india, i am 33 years old boy...

vinupr

•6 years ago

9 Replies

Clear, free and impartial advice on the issues that matter

www.independentage.org For clear, free and impartial advice on - Care and Support, Money and Benefits, Health and Mobility

www.independentage.org For clear, free and impartial advice on - Care and Suppor...

wobblybee

•6 years ago

2 Replies

Personal alarm

Obviously everyone very different need wise, but I have just got a care alarm (they have many different ones). So reassuring for my family and me. When weather...

Obviously everyone very different need wise, but I have just got a care alarm (t...

Litty

•6 years ago

9 Replies

Sth Yorkshire meetup?

Hi, anyone in the South Yorkshire area want to meet sometime for lunch? In the Sheffield/Doncaster/Barnsley/Rotherham areas? Have travel pass, will......

Hi, anyone in the South Yorkshire area want to meet sometime for lunch? In the S...

Capricorn9157

•6 years ago

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Wheelchairs

I would like know, what sort of wheelchair people use? I use a manual wheelchair which is pushed by other people. I can transfer from the wheelchair to a chair...

I would like know, what sort of wheelchair people use? I use a manual wheelchair...

12daisy

•6 years ago

9 Replies

Visiting India

Since I was young India is a country that I've always wanted to visit. Obviously now I wish that I visited it years ago before this damn illness started. But...

Since I was young India is a country that I've always wanted to visit. Obviousl...

wibblywobbly

•6 years ago

14 Replies

My progression is stopped for now. Here's my regimen update 1. How I stopped SCA1.

My name is Joe Peck. I am 52 years old and in 2013 I tested positive for the SCA1 mutation with a CAG count of 42. I am neither a doctor nor a researcher, but...

My name is Joe Peck. I am 52 years old and in 2013 I tested positive for the SCA...

sunvox

•6 years ago

13 Replies

Today's research. Tea anyone?

So I began this morning by reading this paper which is a summary of current research on treatments for SCAs and Huntington's Disease: Protein Misfolding and...

So I began this morning by reading this paper which is a summary of current rese...

sunvox

•6 years ago

Be the first to reply

Broken but not done!

I have not posted for a while now as I was pretty down and I think we can scream and shout, but all we really want to hear is the positive side. As a few of...

I have not posted for a while now as I was pretty down and I think we can scream...

DeniseLB

•6 years ago

15 Replies

N-Acetyl cysteine (NAC) Another interesting supplement.

REMEMBER: Never try something based on some random internet comment. Always talk to a doctor about your research and ideas before trying anything new. - - So,...

REMEMBER: Never try something based on some random internet comment. Always tal...

sunvox

•6 years ago

2 Replies

Today's tiny info on Niagen.

New study out. If I were a mouse with Alzheimer's I'd be jumping for joy :D NAD+ supplementation normalizes key Alzheimer’s features and DNA damage responses...

New study out. If I were a mouse with Alzheimer's I'd be jumping for joy :D NAD...

sunvox

•6 years ago

Be the first to reply

Neta was right! Mannitol and trehalose similar.

So a year ago Neta posted research she found on a sugar called Mannitol but I was too dense to catch on until now. Chemically speaking mannitol is almost...

So a year ago Neta posted research she found on a sugar called Mannitol but I wa...

sunvox

•6 years ago

10 Replies

ESA Assessment

Typical, have been getting myself all psyched up for an ESA (re) Assessment this Friday and just got a phone call telling me they have received further info...

Typical, have been getting myself all psyched up for an ESA (re) Assessment this...

Capricorn9157

•6 years ago

5 Replies

At last I have found work!

Hi after 16 interviews in 5 months I have finally found employment. Yes it is a bit of a pain to get to, being 35 miles away, but I love it. They employ a...

Hi after 16 interviews in 5 months I have finally found employment. Yes it is a ...

Hidden

•6 years ago

8 Replies

Finding the right cure,for Chronic hypertension and Menier's disease..

I am Belinda G. Mayson..I am 70 years old and a heart patient,with a pacemaker. I am a type 2 diabetic, a hypertensive and suffering from meniere's...

I am Belinda G. Mayson..I am 70 years old and a heart patient,with a pacemaker. ...

Belmayson

•6 years ago

1 Reply

Little buggars

I can’t believe I’ve just had my front room window egged !!!!

bevvick1964

•6 years ago

6 Replies

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Posts - Ataxia UK | HealthUnlocked

Ataxia UK

All posts for February 2018

Phase 3 trial of acetyl-DL-leucine for CA and SCA.

Attaxia

I am new here..

Thiamine and Mannitol???

Undiagnosed condition

My experience with extreme tirdness

CA by "bad luck"!

Exercise rescues SCA1 mice.

Breathing

Newly diagnosed

Money savers

Drinking coffee

Trelahose

Trehalose Sugar Supplement

SCA type 2

Clear, free and impartial advice on the issues that matter

Personal alarm

Sth Yorkshire meetup?

Wheelchairs

Visiting India

My progression is stopped for now. Here's my regimen update 1. How I stopped SCA1.

Today's research. Tea anyone?

Broken but not done!

N-Acetyl cysteine (NAC) Another interesting supplement.

Today's tiny info on Niagen.

Neta was right! Mannitol and trehalose similar.

ESA Assessment

At last I have found work!

Finding the right cure,for Chronic hypertension and Menier's disease..

Little buggars

Search posts

Latest poll

How long have you or your relative/friend been diagnosed with ataxia?

Topics

Archive