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Bwest10, Sorry about your diagnosis. Seems like you have a good plan of care - I suggest asking your doctors about nuedexta also - it may have benefits for speech and swallowing in addition to its primary target. My symptoms came on right after I had Covid -- not sure how much it matters at...

The major clinics all seem to have a long wait - unfortunate as it certainly contradicts the importance of an early diagnosis. Toms Wife, I also agree that the bulbar onset, or in my case, "Progressive Bulbar Palsy" - could be given more weight in terms of early diagnosis and treatment.

Tomswife, Thank you for your encouraging words. It's good to hear that your daughter understands the disease and takes the time each week to see Tom with your grandchildren. My daughter is on the spectrum and is going to be a junior in college. I'd worked out of town the last several years and...

Kim, I can somewhat relate - at least on the intractable pain. I've got horrible - neuropathic - pain in my tongue which makes talking, etc very difficult. So, I've largely withdrawn from society and am super depressed. Two major clinics dismissed my pain condition as " not ALS", etc. It seems...

Buglaw, Regarding bulbar onset vs bulbar palsy, I guess it depends on what neuro or clinic you are working with. My understanding is Neuros cannot make a probable (level) ALS diagnosis unless there are clear indications of both upper and lower motor neuron disease. Either upper or lower motor...

Ok - I've got Progressive Bulbar Palsy and am looking for appropriate trials. Thanks Nikki

Nikki, Do you mean all SOD1 variants should qualify for ATLAS ? Thanks

Ace, The "floor effect" you cite seems reasonable as a factor in overall lower results. Seems like the FDA should be granting approvals on safe treatments like this that can be conditional to ongoing results. I agree with your 6-10 month timeline assuming all goes well. Thanks

Looks like they have the FDA Advisory meeting on Jan 11th. Seems like there are two camps (pro and con) on this drug. Best I can tell it may help some people who are not too advanced yet and have multiple rounds of treatments. Any opinions on this particular stem cell treatment and the...

Great info - thanks Nikki