BethU
Extremely helpful member
- Joined
- May 11, 2008
- Messages
- 2,646
- Reason
- PALS
- Diagnosis
- 05/2008
- Country
- US
- State
- California
- City
- Los Angeles
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
"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