Parkinson's meds for ALS?

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jean p

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CALS
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Hi! My brother was diagnosed with ALS last Jan, right before the shutdown. His neurologist put him on Riluzole. Another doctor within the same group diagnosed him with ALS/PSP and put him on Carbidopa/Levodopa. He has also been on Radicava for about a year. Now the first doctor is saying he actually agrees with the second doctor on ALS/PSP. Within a year, my brother's condition has progressed from being able to walk to now practically bed bound and full assist level of care. I am wondering why he was prescribed Carbidopa/Levodopa, which seems to be a pretty powerful drug for Parkinsons. We have since seen a 3rd doctor who feels he has ALS and not PSP and put him on baclofen and TUDCA. He is currently on quite a bit of drugs and I have concerns about drug interaction but I am also worried if he were to stop taking any of the meds, could his illness get worse? I feel both ALS and PSP are tough diagnosis to make and I suppose doctors make educated guesses too. Has anyone heard of Parkinson's drugs being used to treat ALS?
 

Nikki J

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Some people with ALS have Parkinsonism which can occur with several other neurologic diseases. It doesn’t mean they actually have PD. I have never heard of PALS being treated with Sinemet but it is used sometimes for Parkinsonism so I guess it could. It is also a treatment for PSP which has Parkinson’s like symptoms. In both cases the effect is usually short term unlike true PD. I had a relative with PSP. They were originally diagnosed with PD. When they received the PSP diagnosis they stopped Sinemet. I think the doctor supported it because with PSP any benefit would have stopped. They did not seem to accelerate progression after stopping.

are all these doctors neuromuscular specialists? You are right they are tricky diagnoses to make
 

jean p

New member
Joined
Feb 3, 2021
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CALS
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12/2019
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US
Thank you Nikki for your reply and info on Sinemet. My brother is experiencing many of the side effects of the meds, such as difficulty breathing, uncontrolled repetitive motions, agitation, constipation, etc. but these can also be symptoms for ALS/PSP. All three of his doctors are neurologist, one specializes in Parkinsons, and the other two specializes in neuromuscular illness. I know it's tough to treat ALS and PSP as symptoms can overlap. It's unfortunate there hasn't been many major discoveries in treating these illnesses and still no cure.
 
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