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BethU

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In the current issue of MDA/ALS Newsmagazine, there is an article about ALS TDI (Therapy Development Institute) that says the following:

"Next TDI will be examining the neuromuscular junction, the area where nerve and muscle fibers meet, which has become a new focus of attention in ALS research."

The neuromuscular junction is what is affected by the Myasthenic Gravis medicine Mestinon, which slows the brain's nerve impulses a bit ... it lets the impulses from the brain linger at the junction longer ... thus giving them a better chance of getting through to the muscles. (The brainiacs on the board will please excuse my layman's version of events :) )

Although Mestinon only gives symptomatic relief in MG, it improved my muscle strength and energy level when I was taking it (and noticeably improved the speed and crispness of my speech for two days before it stopped working on my bulbar symptoms ...) I have also read anecdotally that other ALS patients have "sometimes" reported benefits from it.

(I had to stop taking it because it interacted badly with the beta blockers I take for my heart disease. I had to choose between what I valued more ... my brain or my heart. Not sure I made the right decision!)

Research on the neuromuscular junction sounds to me very promising, even if it only addresses the symptoms, not the underlying disease process. There is no other treatment that actually improves ALS symptoms, is there, not just slows progression? That would be a huge benefit.

Does anybody know anything about this?
Beth
 

Al

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Wright probably will. Maybe Jeff. They keep up on that stuff.
AL.
 

wright

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Hello Beth

Over the last few years, there has been research that indicates that the etiology of ALS is multifactorial. Initially they thought that it was simply due to neuronal cell death in the spinal cord and brain that would lead to the degeneration of the nerves that innervate our muscles, but now they think it might have something to do with the muscle itself, the nerves that innervate the muscle and the neuromuscular junction in-between the muscle and nerve.
There is actually a very recent study that indicates the axon (bundles of axons are what nerves are made-up of . . . think of axons as the strings that make-up a rope and the rope is the nerve) is what starts to degenerate first and that it slowly marches toward the neuronal cell body in the spinal cord and brain, and that the cell body degenerates last. They're not certain whether the dying process starts in the cell body which then leads to the degeneration of the axons or if it's the other way around, but ongoing research will hopefully shed some light on that. They also speculate that the muscle fibers themselves might contribute to the degenerative process.
As I have said in a couple of other posts: there is a TON of research going on right now . . . more in the last decade than in the previous 100 years (more than most people realize). There are actually two scientific journals devoted exclusively to ALS research, too. Money is obviously needed to continue these types of studies and that is where we come into the picture. Jeff (aka ZenArcher) has started a couple of threads, asking us all to write our congress people to tell them to devote more research funds to ALS research. My advice would be to go to those threads to see what these bills are and to take action. Public pressure is what will get the money, so write to them and keep writing to them.
 

BethU

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Wow. Fascinating! Thank you for your explanation.

Have already written to one Calif. congressman at ZenArcher's prompt, but will get on the stick and do more.
Beth
 
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