Old 07-03-2008, 12:27 PM #1 (permalink)
BethU's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
Default neuromuscular junction research

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
BethU is offline  
Old 07-03-2008, 12:35 PM #2 (permalink)
Al's Avatar
Moderator
Forum Moderator
 
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
♥ Al Al is offline
Moderator
Forum Moderator

Al's Avatar
Join Date: 2004
City: NW of Toronto
State: On
Country: CAN
Diagnosed: 10/2003
Interest: I have been diagnosed with ALS.
Posts: 8,028
Al is on a distinguished road
Default

Wright probably will. Maybe Jeff. They keep up on that stuff.
AL.
Al is offline  
Old 07-03-2008, 12:50 PM #3 (permalink)
wright's Avatar
Very Helpful Member
 
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,193
wright is on a distinguished road
wright wright is offline
Very Helpful Member
wright's Avatar
Join Date: 2008
City: xxxx
State: xx
Country: US
Interest: I am here to lend a helping hand
Posts: 1,193
wright is on a distinguished road
Default

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.
wright is offline  
Old 07-03-2008, 05:09 PM #4 (permalink)
BethU's Avatar
Extremely Helpful Member
 
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
BethU BethU is offline
Extremely Helpful Member
BethU's Avatar
Join Date: 2008
City: Los Angeles
State: California
Country: US
Diagnosed: 05/2008
Interest: I have been diagnosed with ALS.
Posts: 2,661
BethU is on a distinguished road
Default

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
BethU is offline  
Closed Thread

Tags
als, als research, als symptoms, brain, bulbar, heart, medicine, mestinon, muscle, muscles, progression, research, speech, symptoms, therapy, treatment


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Gastroscope Detected Possible NeuroMuscular Condition anitadeanne Do I Have ALS? Is This ALS? 24 02-24-2016 05:13 PM
Undiagnosed neuromuscular condition! autumnrain Do I Have ALS? Is This ALS? 5 10-06-2015 03:00 PM
first visit to Neuromuscular Doctor Audrey1952 Do I Have ALS? Is This ALS? 7 03-28-2015 09:23 AM
Does this sounds like a NeuroMuscular problem? mom2boys0214 General Discussion About ALS/MND 8 04-04-2013 11:08 AM
Neuromuscular Disease. Need some help understanding. ecb57 Do I Have ALS? Is This ALS? 3 11-24-2012 05:44 PM
Appt wit neuromuscular. scared of mnd shineoflight Do I Have ALS? Is This ALS? 5 10-21-2010 12:33 PM
I get that a clean EMG = No ALS, but can it be another neuromuscular disease? ALSFighter777 Do I Have ALS? Is This ALS? 17 04-05-2010 09:47 AM
Exercising with neuromuscular problems AndyDJX Do I Have ALS? Is This ALS? 9 01-13-2010 11:20 AM
Update after visit with neuromuscular doc jennibf Do I Have ALS? Is This ALS? 11 12-29-2008 09:01 AM


All times are GMT -5. The time now is 09:23 PM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016