tag:blogger.com,1999:blog-3500936220214961312.post7354142794052978259..comments2023-10-02T04:06:53.185-04:00Comments on Brass and Ivory: Life with MS and RA: Carnival of MS Bloggers #76Lisa Emrichhttp://www.blogger.com/profile/10862232056342347990noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-3500936220214961312.post-11207336532940489712010-12-03T20:59:49.128-05:002010-12-03T20:59:49.128-05:00Ha ha,
I spent the first 45 years of my life post...Ha ha, <br />I spent the first 45 years of my life postponing all bathroom visist for as long a humanly possible - <br /><br />grade school it was too scary; my underthings were "all wrong," <br /><br />and by junior & high school; too genuinely dangerous,<br /><br />then as an "adult," or anyway, a BARTENDER, why would I leave a bar full of tipping customers to PEE when my shift was only 12 hours?<br /><br />I always drank all water available, but it was a shock to learn that I was better off NOT retaining it for all eternity.<br /><br />Pee & Poo, I do much better when I take scheduled TRIPS to the head...<br /><br />thanks for your openness!imascatterbrainhttps://www.blogger.com/profile/05108802068446089855noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-9553034294188874322010-12-02T07:05:51.251-05:002010-12-02T07:05:51.251-05:00Acorda Therapeutics nor lead study investigators (...Acorda Therapeutics nor lead study investigators (all of them!) would cooperate with me – or offer their perspectives – on the merits of global self-scoring metrics or hard endpoint data, such as improvement in walking speed, in assessing the new oral Ampyra. An Acorda spokesman did comment that the company preferred NOT to work with me, citing past “conclusions contrary to the preferred image" for Ampyra. Consequently, I welcome hearing directly from MS patients and prescribers directly to assess “how beneficial” Ampyra truly is for you – the ones that matter. ~ David J Phillips<br /><br />Acorda VP Sabella told analysts on the third-quarter 2010 earnings call “approximately 75 percent of commercially-insured MS patients had no – or limited – prior authorizations (PAs).” Only an estimated five-percent of such patients are totally blocked from receiving drug reimbursement, said Sabella. Are PAs an issue for MS patients looking to start therapy?<br /><br />As of September 30, management said the rate of “first refill” was 67 percent. How many of you folks are still on Ampyra for more than 30 days?<br /><br />It is on the issue of “hard endpoints” where Acorda and I diverge sharply. In the longer of two extension studies, many responders have begun to demonstrate decreases in walking speed over time. (Remember, the drug doesn’t address the pathophysiology of the disease!) <br /><br />Acorda likes talking about impressive 35 percent improvements in walking assessment scores, such as the length of time it takes for patients to complete a 25-foot course. What management doesn’t like to bring up is that in regulatory meetings with the FDA, committee members expressed concerns about the sponsor’s primary endpoints and the magnitude of improvement in the actual decreases in walking times for Ampyra-treated patients: differences of only 0.5 second and 0.88 seconds in its two pivotal trials. How many of you are “feeling better” the longer you stay on Ampyra – and how significant (in seconds) is your increase in walking speed or leg strength? <br /><br />Contact: http://www.bnet.com/blog/sec-filings/acorda-8217s-ms-drug-ampyra-looks-good-now-but-that-probably-won-8217t-last/646David J. Phillipshttps://www.blogger.com/profile/01447096336527192686noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-44611809737826456012010-11-21T16:02:31.230-05:002010-11-21T16:02:31.230-05:00Just a thought for the future 5 to 10 years from n...Just a thought for the future 5 to 10 years from now<br /> There are earlier stage drugs in development which show great promise - 2 immune system proteins seem especially troublesome in ms-il-17 and il-23. agents blocking these look great in animal trials and there is a lot of hope around them. Spread the hope and check it out...it's always little steps when your learning to walk...when you could walk.Unknownhttps://www.blogger.com/profile/11535251848542032565noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-47839339337700805472010-11-21T11:08:33.977-05:002010-11-21T11:08:33.977-05:00Brian!
So good to hear from you. I'm so gl...Brian! <br />So good to hear from you. I'm so glad if I helped in some small way. Your emails of gratitude helped me keep going too. Things are going really good for me lately. I hope that you are doing well. Thanks so much for dropping a note. Really good to hear from you.<br /><br /><br />Webster,<br />Now you've given me a topic which needs to be researched. I'll have to put that on my long list of to-do's. I've tried the cold over itching before. It helps. :)Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-38090728682169829242010-11-19T21:47:14.197-05:002010-11-19T21:47:14.197-05:00Another great Carnival, Lisa. Somehow I missed th...Another great Carnival, Lisa. Somehow I missed this post of Blindbeard's on her blog, but what she describes is a classic example of the Nerve Gate Theory of sensory perception, where one sensation is perceived before another. In her case, she discovered that pressure is perceived before pain of the MS Hug. I once discovered that cold (from a compress) precedes incessant itching.<br /><br />I wish I could find a complete list of the order of when senses are perceived. If anyone knows, please post it here.Websterhttps://www.blogger.com/profile/13518858062969978457noreply@blogger.comtag:blogger.com,1999:blog-3500936220214961312.post-32546269424742791022010-11-19T19:53:54.976-05:002010-11-19T19:53:54.976-05:00Hey Lisa!
It's been a long time, but I was sto...Hey Lisa!<br />It's been a long time, but I was stopping by to say hello. You and this blog helped me in so many ways when I was first diagnosed. Hope all is well with you. <br /><br />All my best,<br />Brian~BriGuy~https://www.blogger.com/profile/05038468822595764247noreply@blogger.com