Motor neurone disease

[Training till failure]

Seen a post of a 13 year old kid with motor neurone disease that is currently on no medication with no sign of trial which is no good.

It's currently breaking the families hearts atm and can't imagine what they must be going through.

Is there a peptide, serm, sarm, steroid or some sort of medication you can buy online to slow down MND that anyone is aware of or worth trying so he can potentially last longer until trial treatment?

Otherwise he is going to die as it eventually leads to death.

I'm posting this because they are seeking desperate help.

Let's all come together and try and save this little boy.

Bounce idea's, advice, literally anything that could slow it down while they still wait trail.

 

[pigeonhed]

I donate time to OHSU
OHSU

There is nothing in these pages that will provide help. However, currently at OHSU there are three studies for children with MND. The drugs being used are Riluzole, Edaravone and Tofersen.

I strongly encourage reaching out to an advanced medical center like OHSU or another leading neurology research institution, as they may have options the family hasn’t explored yet.

Best wishes.

 

[Training till failure]

I donate time to OHSU
OHSU

There is nothing in these pages that will provide help. However, currently at OHSU there are three studies for children with MND. The drugs being used are Riluzole, Edaravone and Tofersen.

I strongly encourage reaching out to an advanced medical center like OHSU or another leading neurology research institution, as they may have options the family hasn’t explored yet.

Best wishes.

Located in the United Kingdom.

Still worth mentioning to the family as I'll reach out to them and tell them.

They might be willing to travel

 

[Ghoul]

My curiosity was sparked some time ago when I noticed researchers use walking pace as a proxy for "biological age" or "vigor" in studies of aging.

It seems the root of this is related to the health of the myelin sheath. This is the "electrical insulation" on the "wires" of the nervous system. It constantly renews, and trained athletes develop thicker myelin sheaths on the nerves involved in movements they do frequently, improving performance.

As this "insulation" thins or disappears due to disease or injury, the electrical signals being transmitted on the nerves involved weakens or are blocked. A major reason walking pace slows in the elderly,

This sheath also impacts neurological function. Recent trials on healthy humans demonstrate a drug used to treat this "demyelization" condition in multiple sclerosis patients , dalfampradine, improved intelligence.

So I got some from india Pharma to experiment with as a performance enhancing drug, cognitive enhancer, etc. At normal doses it's very safe. At high doses it improves nerve conduction TOO much, causing seizures until it wears off. Adverse events are very rare at the correct dose,

It makes movement easier. Almost effortless. Muscle activation seems to be sped up, a lot, Thinking is clearer. I had slight hand trembling, that's it. It's been around for a quite a while now and has a good safety record. And yes, I walk quite a bit faster.

Anyway, it's not indicated for treatment of motor neuron disease, but demyelization is involved, and the drug is available as a generic now and cheap (insurance used to refuse to cover it as it was $3k/mo). I know some doctors on the leading edge prescribe it "off label" for a number of conditions involving nerve dysfunction. Perhaps it'll help.

It's been suggested that since exercise stimulates myelin growth, because the drug enables movement in the effective areas, it actually helps fix the underlying problem as the patient moves more, stimulating myelin repair,

Here's how it works:


View: https://youtu.be/MZf4k516NgQ


I use Sun Pharma Dalstep

 

[aljowa]

My curiosity was sparked some time ago when I noticed researchers use walking pace as a proxy for "biological age" or "vigor" in studies of aging.

It seems the root of this is related to the health of the myelin sheath. This is the "electrical insulation" on the "wires" of the nervous system. It constantly renews, and trained athletes develop thicker myelin sheaths on the nerves involved in movements they do frequently, improving performance.

As this "insulation" thins or disappears due to disease or injury, the electrical signals being transmitted on the nerves involved weakens or are blocked. A major reason walking pace slows in the elderly,

This sheath also impacts neurological function. Recent trials on healthy humans demonstrate a drug used to treat this "demyelization" condition in multiple sclerosis patients , dalfampradine, improved intelligence.

So I got some from india Pharma to experiment with as a performance enhancing drug, cognitive enhancer, etc. At normal doses it's very safe. At high doses it improves nerve conduction TOO much, causing seizures until it wears off. Adverse events are very rare at the correct dose,

It makes movement easier. Almost effortless. Muscle activation seems to be sped up, a lot, Thinking is clearer. I had slight hand trembling, that's it. It's been around for a quite a while now and has a good safety record. And yes, I walk quite a bit faster.

Anyway, it's not indicated for treatment of motor neuron disease, but demyelization is involved, and the drug is available as a generic now and cheap (insurance used to refuse to cover it as it was $3k/mo). I know some doctors on the leading edge prescribe it "off label" for a number of conditions involving nerve dysfunction. Perhaps it'll help.

It's been suggested that since exercise stimulates myelin growth, because the drug enables movement in the effective areas, it actually helps fix the underlying problem as the patient moves more, stimulating myelin repair,

Here's how it works:


View: https://youtu.be/MZf4k516NgQ


I use Sun Pharma Dalstep

View attachment 314452

Absolutely fascinating. Thanks for sharing. Out of curiosity, what dose do you personally take? And do you plan to take this indefinitely?

 

[ineffectual]

My curiosity was sparked some time ago when I noticed researchers use walking pace as a proxy for "biological age" or "vigor" in studies of aging.

It seems the root of this is related to the health of the myelin sheath. This is the "electrical insulation" on the "wires" of the nervous system. It constantly renews, and trained athletes develop thicker myelin sheaths on the nerves involved in movements they do frequently, improving performance.

As this "insulation" thins or disappears due to disease or injury, the electrical signals being transmitted on the nerves involved weakens or are blocked. A major reason walking pace slows in the elderly,

This sheath also impacts neurological function. Recent trials on healthy humans demonstrate a drug used to treat this "demyelization" condition in multiple sclerosis patients , dalfampradine, improved intelligence.

So I got some from india Pharma to experiment with as a performance enhancing drug, cognitive enhancer, etc. At normal doses it's very safe. At high doses it improves nerve conduction TOO much, causing seizures until it wears off. Adverse events are very rare at the correct dose,

It makes movement easier. Almost effortless. Muscle activation seems to be sped up, a lot, Thinking is clearer. I had slight hand trembling, that's it. It's been around for a quite a while now and has a good safety record. And yes, I walk quite a bit faster.

Anyway, it's not indicated for treatment of motor neuron disease, but demyelization is involved, and the drug is available as a generic now and cheap (insurance used to refuse to cover it as it was $3k/mo). I know some doctors on the leading edge prescribe it "off label" for a number of conditions involving nerve dysfunction. Perhaps it'll help.

It's been suggested that since exercise stimulates myelin growth, because the drug enables movement in the effective areas, it actually helps fix the underlying problem as the patient moves more, stimulating myelin repair,

Here's how it works:


View: https://youtu.be/MZf4k516NgQ


I use Sun Pharma Dalstep

View attachment 314452

Every time I put in an order you have me considering yet another one.

 

[Ghoul]

Absolutely fascinating. Thanks for sharing. Out of curiosity, what dose do you personally take? And do you plan to take this indefinitely?

10mg 2x day. That's the one and only recommended dose for everyone, and used in the research on healthy subjects as well.

I took it for 15 days, and have more on the way.

It's normally taken indefinitely. I haven't found any ill effects from long term use in the literature. I'm not sure if I'll use it year round. The effects seemed to take a few days to fully develop.

 

[aljowa]

10mg 2x day. That's the one and only recommended dose for everyone, and used in the research on healthy subjects as well.

I took it for 15 days, and have more on the way.

It's normally taken indefinitely. I haven't found any ill effects from long term use in the literature. I'm not sure if I'll use it year round. The effects seemed to take a few days to fully develop.

Thanks. I actually have some type of nerve damage that affects the motor innervation of my right leg's vastus lateralis, as well as adductor magnus. Also partial numbness along my medial right shin area. Basically an anomalous nerve root injury (likely L3 or L4) that quite literally came out of nowhere. It was like I was just struck by lightning. This was back in March 2021, and after three MRIs, a CT scan, a nerve conduction test, three neurologists and two orthopedic doctors, I never got an explanation for what exactly happened, nor was I ever given a diagnosis. Truly a mind-fuck. Even though I doubt it will do anything, I'm gonna give this medication a shot. I'm willing to try anything. I really appreciate the information. I don't know what you do for a living, but you would be a hell of a medical researcher. You definitely have the intellect and will for it, based on the many posts I've seen from you.

 

[Ghoul]

Thanks. I actually have some type of nerve damage that affects the motor innervation of my right leg's vastus lateralis, as well as adductor magnus. Also partial numbness along my medial right shin area. Basically an anomalous nerve root injury (likely L3 or L4) that quite literally came out of nowhere. It was like I was just struck by lightning. This was back in March 2021, and after three MRIs, a CT scan, a nerve conduction test, three neurologists and two orthopedic doctors, I never got an explanation for what exactly happened, nor was I ever given a diagnosis. Truly a mind-fuck. Even though I doubt it will do anything, I'm gonna give this medication a shot. I'm willing to try anything. I really appreciate the information. I don't know what you do for a living, but you would be a hell of a medical researcher. You definitely have the intellect and will for it, based on the many posts I've seen from you.

Thanks brother, I'm an enthusiastic amateur, "citizen scientist" as they say.

The PCT guys don't have Dalstep on their pricelists, you have to ask for it. Indiamart may be worth checking too, for a better price. It's around $2/tab from the usual guys here, so getting it lower would be great for long term use. (please share any cheaper sources you find).

The "raws" are incredibly cheap, and available from many science supply places in the US, but it's got to be in an extended release tab. I wouldn't cap my own, this is. something you don't want to risk ODing on. When they want to induce temporary seizures for research, they administer a big dose of dalfampradine,

Hope you find it helps. Demyelination can occur from injury too, so in theory it might improve your condition.

 

[aljowa]

Thanks brother, I'm an enthusiastic amateur, "citizen scientist" as they say.

The PCT guys don't have Dalstep on their pricelists, you have to ask for it. Indiamart may be worth checking too, for a better price. It's around $2/tab from the usual guys here, so getting it lower would be great for long term use. (please share any cheaper sources you find).

The "raws" are incredibly cheap, and available from many science supply places in the US, but it's got to be in an extended release tab. I wouldn't cap my own, this is. something you don't want to risk ODing on. When they want to induce temporary seizures for research, they administer a big dose of dalfampradine,

Hope you find it helps. Demyelination can occur from injury too, so in theory it might improve your condition.

For real, man, I see you pop up randomly on so many unrelated threads with relatively intimate knowledge about whatever happens to be being discussed, and nearly always with references/sources to back it up. Speaking personally, your posts on GLP-1s, modafinil, peptide aggregates, and immunogicity have sparked further research into these topics on my end that led to some fascinating and invaluable information. Not to mention other small bits of useful information on various things that escape my mind at the current moment. I admire the time commitment you invest into finding, reading, and digesting these large swathes of content; you must comb through a significant amount of medical literature to find these gems. I think I speak for a large segment of this community in saying that your presence here has been a huge benefit for the overall quality of this site. Respect where respect is due.

Ah, thank you for anticipating my follow-up question about sources, because I couldn't find anything on the PCTzone site. I did see the Indiamart stock, and I plan on emailing PCT 24/7 about it. I'll definitely post it if I find an alternative, cost-effective source. And thank you for the well wishes. At the very least, it seems like an interesting drug to try. Might even get a ~5% strength boost from increased neural recruitment; I'll take it, lol.

Thanks again, good sir.