ALS News Today Forums » All Posts https://alsnewstoday.com/forums/forums/forum/navigating-als-challenges/diagnosis-information-and-general-questions/feed/ Fri, 24 May 2024 04:26:23 -0500 http://bbpress.org/?v=2.5.14-6684 en-US https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25543 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25543 Thu, 23 May 2024 23:56:58 +0000 Sylvia Daniellem can you share your results to date?

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25535 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25535 Thu, 23 May 2024 15:25:08 +0000 NJGuy Hi Leonard,

Glad to know your wife responded well to the CNM-AU8. I would also like to get this medicine and I am 36 months+ after diagnosis. You mentioned this is available from NOVA in Davie, FL. Is there any email or phone number you can share which can help me obtain this medicine?

I believe CNM-AU8 is a gold nanoparticle suspension, there are some brands on Amazon which offer similar gold suspension. Has anybody tried a similar alternate option? Please share your experience.

Thanks & best regards,

Njguy

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25518 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25518 Thu, 16 May 2024 20:05:11 +0000 Eric Jensen Yes! 3/2020

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25513 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25513 Wed, 15 May 2024 15:43:57 +0000 Patti Keniston My husband has been receiving the CNM-AU8 through EAP for about 6 months now. Haven’t noticed any change. He has fairly slow progression- diagnosed May 10, 2018. Still walks very slow with a walker around the house. Uses a wheelchair for any distance. The liquid has no taste and he just has to go in every 3-4 months to run through questions and a physical exam. Pretty easy peasy.

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25512 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25512 Tue, 14 May 2024 19:57:05 +0000 Richard L Wheeler I’m less than 36 months

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25511 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25511 Tue, 14 May 2024 17:26:28 +0000 Erin Dittoe I was hopeful of participation. Then realized, this like ALL Healy trials, are only open to those who are less than 36 months from symptom onset. Nice they are finally permitting virtual participation. Anyone else feeling like once 36 months has elapsed you have little hope of anything including seeing ALS as a livable disease?

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25509 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25509 Tue, 14 May 2024 16:07:48 +0000 Richard L Wheeler No issue

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25505 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25505 Mon, 13 May 2024 16:01:38 +0000 DaveAndKimberly Richard, sorry, but I haven’t received your message until this one now.

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25504 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/page/2/#post-25504 Mon, 13 May 2024 15:51:51 +0000 Richard L Wheeler I sent email but no reply.

]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25494 <![CDATA[Reply To: CNM-AU8 Trial]]> https://alsnewstoday.com/forums/forums/topic/cnm-au8-trial/#post-25494 Thu, 09 May 2024 00:14:50 +0000 DaveAndKimberly Kimberly started taking the trial medication CNM-Au8 Expanded Access Program on Thursday, and by Sunday, we saw remarkable progress. Transitioning her from the walker, our usual mobility aid, became noticeably easier. With my help, she could balance herself for longer stretches without leaning heavily on me. Though it might seem insignificant to some, for us, it’s a significant leap forward in her recovery journey.

Moreover, we’ve observed another positive change: Kimberly can now adjust her balance when leaning forward or to either side by up to 20 degrees. Previously, any tilt would lead to a loss of balance, risking a fall. This newfound ability demonstrates the effectiveness of the treatment and reinforces our optimism for Kimberly’s ongoing improvement.

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