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

[sunvox]

Running out of time so have to just post links and come back to this later, but this looks very interesting:

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

cerebellumandataxias.biomed...

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Effects of acetyl-DL-leucine on cerebellar ataxia (ALCAT trial): study protocol for a multicenter, multinational, randomized, double-blind, placebo-controlled, crossover phase III trial

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

[Zephyr10]

You are such a good researcher! Excited for the results of this extensive trial. If its good im getting it for my father!

[sunvox]

Ok. So I'm taking a break from work study and reading the paper and another that is cited. I think this study is brilliant because it is a Phase 3 trial so we will get real and relevant results, and so far the results seem very positive for a broad group of people with both CA of unknown origin as well as SCA patients with a genetic problem,

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BUT

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as I emphasized to Litty earlier today, it is important that people understand what this molecule is potentially doing. First, the researchers honestly don't know. Second, the best guess right now is that this molecule is somehow involved in neuronal communication. What that means is that this is something that can alleviate symptoms, but is not fixing any of the underlying problems that are at the root cause of the disease.

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I am absolutely not wanting to "rain on the parade". I just want everyone to understand what this represents. I still advocate for a combination of mannitol, EGCG, niagen, thiamine, vitamin D, and pterostilbene. Each supplement has real science to support it's role in diminishing neurodegeneration.

[Stanleyclan in reply to sunvox]

Hi Joe....just wanted to ask whether...along with your little cocktail listed above....you still take the Centrum multi vit? I've had a bit of a spend up today shopping around for the various supplements you have so kindly pointed us towards the research on but I don't want to over dose him 😁

[sunvox in reply to Stanleyclan]

No actually i stopped taking the Centrum as it is high in B3 so I didn't feel it was necessary anymore. Interesting thought crossed my mind though. I have to ask myself why my symptoms came so much later than is typical for someone with a CAG count of 42, and that made me think about my lifestyle. Interestingly enough I ran my whole life, and took Centrum for 20 years which is high in B3 and since college I have been mostly vegetarian and always ate lots and lots of cruciferous veggies. Anyways just interesting.

[Stanleyclan in reply to sunvox]

Thank you! I do think my husband's running has helped him...both his brother and sister have far more obvious symptoms....he has also been vegetarian for 8 years....🤔

[NPJOSEPH81 in reply to sunvox]

Is the combo you mentioned effective for sporadic cerebellar ataxia?

[Litty]

Worth trying! Thank you for pointing out to us x

[Litty in reply to Litty]

Where can you buy it please? x

[wobblybee in reply to Litty]

🙂 Acetyl Dl Leucine ( isoleucine/ Tanganil) has been used for decades in the UK, to treat Vertigo. The primary objective in the trial is to examine the efficacy, and tolerability, in relation to motor function ( measured by the SARA Scale) in patients with CA. Speak to your Neurologist for advice about potential side effects 🙂xB

[Litty in reply to wobblybee]

Lol x I had no idea! Thank you for that x

[neta in reply to wobblybee]

Right.. I looked into acetyl de leucine several years ago.My neurologist said it looked interesting but not more. I never took itv xx n

[Pekingese2]

Thanks for that sunvox will have a word with specialist

[Pekingese2]

Hi sunvox Do you know if acetyl dl leucine is licensed in U.K. 🤔

[sunvox in reply to Pekingese2]

I'm sorry to sayI haven't been able to find it anywhere outside France. Curious.

[Pekingese2 in reply to sunvox]

That's ok sunvox it's good to hear about it very interesting I spoke to my specialists secretary yesterday and mentioned it She said she'd get back to me Your posts are a good read. Very interesting

[Pekingese2 in reply to sunvox]

Hi joe. We have just been looking at the paperwork for me to take part in the 100,000 genomes project and we have just noticed it may affect our life insurance ??????? I don't now what sca I have you see and was going to take part Bit wurried

[Libra7 in reply to Pekingese2]

I bought mine from a company in France but after taking the maximum dose for three months there was no improvement in my balance or gait. My neurologist was aware that I was taking it.

[Pekingese2 in reply to Libra7]

Oh dear sorry to here that thanks for sharing that 👍

[Libra7]

After reading a report last year about aceetyl DE leutine I tried it for three months. I have SCA6. It had absolutely no effect on me!

[Pekingese2]

Hi sunvox how you duing I haven’t been on here for a while Did you find out anything positive about the trials x Davie