Acetyl-DL-leucine, Mannitol and Thiamine MIGHT help some ataxias?

[Litty]

I hasten to add that I am in no way qualified medically but have ataxia and am very aware I am getting worse so willing to try anything! Lol x It may easily be placebo effect.

It is very early days but this may help others so posting x

OK so I have been using Thiamine and Mannitol and I THINK they may be helping me a bit for my SCA1, but they have made my tummy too upset so I have had to stop Mannitol

Thanks to Wobblybee for telling me the french use Tanganil (Acetyl-DL-leucine), and I am trying (very early days) but I THINK it is helping. Thank you too to sunvox for telling us. You are much better than me at research so a couple of questions please. Is it OK to take long-term? Is 500 gm the amount? Why can you not get in UK please?

From what folk say it only helps some ataxias - sorry x

[sunvox]

Hi Litty,

So exciting to hear you might be seeing some benefit even if it is a placebo effect. As I have long argued I believe illnesses like ours require a multi-pronged approach.

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First, Acetyl-DL is a naturally occurring amino acid and has long been used for treatment of other illnesses with no longterm toxicity that I could find, but a doctor or pharmacist is the proper person with whom to inquire.

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Next, however, I would add that recently a few folks have posted research that hints at the fact that part of how mannitol may be helpful is BECAUSE it produces gas in the stomach. It appears one type of gas produced may actually have beneficial effects. So not only might the tiny amount of mannitol that makes it into the blood stream and crosses the BBB be helpful, perhaps the gas is adding to the help as well. Maybe you can just reduce the amount until you reach a "happy medium" that is tolerable. I can only take mannitol in my coffee at home. I don't dare take it while I am working.

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Would you mind listing what items you are trying at the moment? Is it just the ones above?

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All the Best,

Joe

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Sodium butyrate rescues dopaminergic cells from alpha-synuclein-induced transcriptional deregulation and DNA damage

ncbi.nlm.nih.gov/pubmed/283...

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Sodium butyrate exerts protective effect against Parkinson's disease in mice via stimulation of glucagon like peptide-1.

ncbi.nlm.nih.gov/pubmed/289...

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Butyrate, neuroepigenetics and the gut microbiome: Can a high fiber diet improve brain health

sciencedirect.com/science/a...

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[Litty in reply to sunvox]

You may be right about Mannitol because I am better with it!

At present taking just 2/3, mentioned above. Nothing helped to now.

Multi-pronged - yes but all so individual, you need to find out what works for you. Lol - you also need patience which I have not got!!

Sodium butyrate looks very interesting, worth a try, thank you x

[sunvox in reply to Litty]

I must admit I haven't had time yet to read and understand the papers I linked above and am going on the comments from another poster and my cursory reading of the summaries, but I believe "butyrate" is a gas produced in your stomach as a by-product of your intestines at work. Who knew "gas" might be good for you

[carnevac]

Acetyl-DL-leucine improves gait variability in patients with cerebellar ataxia—a case series

ncbi.nlm.nih.gov/pmc/articl...

Note: I tried Tanganil for my SCA1 and saw no improvement in my gait. Will probably continue to buy it from the French website, though. (Maybe I didn’t take it correctly or use it long enough.) I bought it from this website:

moncoinsante.co.uk/?___stor...

Thanks.

Carol

[Litty in reply to carnevac]

Nothing seems to work but we keep trying x