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Ataxia Support Network

Aminopyridines and Acetyl-DL-Leucine

#1

For the most recent information see -

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#2

Thank you for posting this. I tried to find acetyl-DL-leucine but can’t find it in the US. So, I’ll ask my neurologist when I speak with him this week. I have chronically low protein levels which my biochemist husband might indicate that I need more amino acids (acetyl-DL-leucine is an amino acid). I’ve also started taking a tri-amino supplement. Always trying something! And, I had 2 hours where my body worked like it used to work! My neighbors had a great band playing (Craig Eastman) and I STOOD and gabbed and gabbed and then sat and tapped my hands/feet IN TIME! Then, I got totally ataxic/floppy but what a great two hours :slight_smile:

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#3

https://ca.iherb.com/pr/source-naturals-l-leucine-500-mg-240-capsules/19155
Is this the same thing?
I found and ordered this online (I think the company is based in NY.)

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#4

:thinking: To make sure you’d need to check the list of ingredients. I clicked on the ‘reviews’. They were mixed, and unwanted side effects were mentioned. But as we all know only too well, sometimes personal trial and error is the true test…

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#5

I found this company, the product comes from Milwaukee.
https://www.sigmaaldrich.com/catalog/product/sigma/l7875?lang=en&region=CA

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#6

:thinking: 99%…will you try it. Are you taking any medication it might ‘conflict’ with.

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#7

I would try it for sure. This appears to be a company webpage that we may not be able to order directly from. Sorry. Still searching.

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#8

I have to say I’ve exhausted google over this product. Some searches took me back to L-leucine. I’m not certain if this is the same as DL-Leucine, maybe it’s a different product? a different formulation? A question for a doctor? Does a doctor have access to it? I don’t know, but I’m certainly going to inquire about it at my neurologist visit next month. I need to check if it is right for me anyway as one should always do before taking any medication.

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#9

:thinking: Yes, I think this needs an expert’s opinion, chances are they may be the same thing but, the link does specifically say ‘DL’…

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#10

I’ve been on 4-aminopyiridine for about a month now. I took 5 mg QD for a week and then BID. When I moved to twice a day, I started to feel awful, way more dizzy than usual. One morning I could not even stand without falling over. That’s when I finally associated the increased dizziness with the 4-AP. I stopped it and the dizziness went away so that was the cause.

However, while I was way more dizzy, I was also way less ataxic! So, now I’m trying it every other night, just 5 mg. So far, the ataxia is pretty quite. I went for a walk last night! Woooo hoooo!

I have a genetic variation in my liver that makes me a poor metabolizer of most medications. Because of this, I think the regular dose was just way too high for me (a common event in my life). So, when you try things, always keep in mind the need to personalize dosing for your body (lower or higher depending). Knowing your genetics can help in that regard (I did 23 and me and then ran my genome in to promethease; I also had some genetic tests done at the hospital and those agreed completely with the promethease analysis).

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#11

:slightly_smiling_face: I wish my husband was a Biochemist. Re 4-AP, in your opinion, does this give exactly the same good results as the much touted Ampyra :thinking: And, if you yourself have downbeat Nystagmus, have you noticed an improvement in this due to 4-AP :thinking: xB

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#12

I don’t know about Ampyra. My neurologist had my 4-AP compounded by a compounding pharmacy. I have not been diagnosed with nystagmus but I often have what I describe as very jumpy eyes. The 4-AP makes that jumpiness worse for about 8 hours after I take it. But, then, things are definitely more stable on the whole. I’ll keep up my low-dose regimen and keep everyone posted.

It’s good to be cautious about attributing change to this thing or that thing. I’ve noticed a great deal of variability with this condition. While some things are near constant without medication (difficulty breathing, gurgly heart caused by the POTS/small fiber neuropathy), my ataxia is episodic. It is reliably brought on by cold weather (which is finally abating here in Massachusetts) and exercise. And exercise has not sent me to immediately lie-down and gyrate since about a week into the 4-AP. But, it’s warmer here. So, I need to time to tell if the 4-AP is really helping or not.

But my husband and I went for another walk yesterday and I was not wiped out and wobbly when we got back!!! YES!

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