Old 02-27-2018, 04:16 PM #1 (permalink)
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Default Is there a current study evaluating why some people with PLS don't progress to ALS?

I'm starting a new thread to try to work out a bug in the system. I thought I've seen something recently about a study of PLS patients to attempt to learn why they have PLS rather than ALS. If there's not such a study, there should be.
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Old 02-27-2018, 04:25 PM #2 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Thanks. We will try to fix the bug.
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Old 02-27-2018, 04:31 PM #3 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

I'm replying to this thread to try to work out a bug. Thank you.
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Old 02-27-2018, 04:53 PM #4 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Re studies. Dr Floeter had a longitudinal PLS study at NIH but it is either finished ( I think) or if not no longer enrolling


Dr Atassi at MGH presented a report of his PET MRI study at the December MNDA. Both PALS and PLS people had definite findings on MRI both in different ( though close maybe adjacent?) areas. When asked he said he was not sure what it signified and wanted more study especially with early PLS

Were either of those what you were thinking of?
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Old 02-27-2018, 05:06 PM #5 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Thanks so much for your patience. Weirdest thing! I hope it can be fixed quickly.

With regards to your question about PLS/ALS and a study of patients to figure out why people develop PLS instead of ALS- I haven't seen anything out there with that specific goal quite yet. However, there is definitely research interest- and I have spoken to two different neuros about it. Dr David Taylor is the the VP of Research at ALS Canada, and he brought it up as a potential focus of study in the future. It's been discussed as a way to figure out what people with PLS have that prevents them from developing LMN issues and harness that to try to slow down the disease process in those with ALS. My own neuro also brought it up, so I think the idea is percolating in the neuro world.

It sounds like currently the biggest push is to find biomarkers for PLS first. I participated in an imaging study (MRI) that indicates there are some things that show up in people with PLS that do not show in ALS- so could be used to differentiate. From what I understand, there is evidence that there is some sort of neural repair/regrowth/new connections in a particular part of the brain in the researcher's study subjects with PLS. She hasn't published a paper yet, but has presented the initial findings at a couple of conferences- likely to drum up more funding and interest.

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Old 02-28-2018, 05:24 PM #6 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Nikki,

I think the proposed study mentioned by ShiftKicker in the next post is the one I'm thinking of.

I still can't find a way to reply to a PM.
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Old 02-28-2018, 05:29 PM #7 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Will someone who is not a mod look and see if they have an option to pm old dog? We mods see the option for everyone. Otherwise you should only see that option if both of you have privileges. Let me know.
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Old 02-28-2018, 05:38 PM #8 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Nikki,

I sent you a PM to say that the problem appears to be solved.
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Old 03-01-2018, 12:04 AM #9 (permalink)
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Default Re: Is there a current study evaluating why some people with PLS don't progress to AL

Sure should be resolved I was able to send old dog a PM (but I didn't go through with it as it seems resolved )
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