Date: Wed, 2 Nov 94 16:11:25 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#130, 03 October 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ----- == == This e-mail list has been set up to serve the world-wide == == ALS community. That is, ALS patients, ALS researchers, == == ALS support/discussion groups, ALS clinics, etc. Others == == are welcome (and invited) to join. The ALS Digest is == == published (approximately) weekly. Currently there are == == 350+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == Sorry, but this is *not* a LISTSERV setup. == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Results of Neurontin survey 2 .. mistake in statistics on Neurontin survey 3 .. ALS--Foot-Actuated Mouse 4 .. Is ALS Hereditary? 5 .. re: Stephen Hawking's Program 6 .. Internet support resources? 7 .. some paralysis reversed in animals 8 .. re: Sources of info on multifocal motor neuropathy? 9 .. B complex Megadose (1) ===== Results of Neurontin survey ========== Date : Fri, 30 Sep 94 09:34:25 EST >From : "Mike Doliton" Subject: Results of Neurontin survey To All: Here are the results of the recent survey on people taking Neurontin. It's a mixed bag. Some people experienced strengthening and some people experienced weakening. My guess is that one of the side effects of Neurontin is drowsyness and this can be mistaken for weakness. Only one person stopped taking Neurontin. One other person was taking Riluzole and experenced weakening. 11 people responded. 1 person was on Riluzole as I explained above. All the others were taking Neurontin. 1 person was on CNTF. 6 people experienced strenghtening. The areas where positive good was found are: swallowing, sleeping, gag reflex gone, weight gain (possibly do to swallowing better), hands, and breathing better. 3 people experienced weakening. 1 person was on Riluzole. The areas where weakening occured where people were on Neurontin: difficulty eating, and speech declined. The person on Riluzole experienced weaking in: Lungs, hands, arms, legs, speech, and swallowing. The statistics are 33% experienced weakening on Neurontin and 66% experienced strengthening on taking Neurontin. Only 1 reported discontinuing Neurontin. For those people taking Neurontin please report to me if your experience changes. I will then send the report for publishing. Regards, Michael Doliton Sony Medical Systems (2) ===== mistake in statistics on Neurontin survey ========== Date : Fri, 30 Sep 94 11:10:34 EST >From : "Mike Doliton" Subject: mistake in statisics on Neurontin survey To All: I make a mistake in the statistics on the Neurontin survey. I included the Riluzole patient in the statisitics. If we take out the Ruluzole patient the statisics are: 75% showed strenthening and 25% showed weakening on taking Neurontin. Regards, Michael Doliton Sony Medical Systems (3) ===== ALS--Foot-Actuated Mouse ========== Date : Fri, 30 Sep 1994 14:00:57 -0500 >From : Peggy Goode Subject: ALS--Foot-Actuated Mouse I am forwarding the following information from another list; I thought you might know someone who needed this information; sorry if it is old hat to you. pdg@dcccd.edu Peggy Goode ============================ To : Multiple recipients of list C+HEALTH Date : Friday, September 30, 1994 6:41 am Subject: Re: Foot-Actuated Mouse for Macintosh? >From : ensming@WPDIS01.WPAFB.AF.MIL] In your message of 29 Sep 1994 at 1504 EDT, you write: > I am looking for a foot-controlled mouse, trackball, or other > cursor-positioning system for the Macintosh. Ideally, this would > be one in which the right foot controls positioning of the cursor, > and the left foot takes care of single, double, and triple clicking, > and click-drag combinations. Please reply direct to me at: > prh4@cornell.edu. > > Peter R. Hoover > Cornell Publications Services > East Hill Plaza > Ithaca, NY 14850 > 607 255-9454 > (prh4@cornell.edu) > Curtis trackball with foot pedal Call 603-532-4123 for details Source: RSINetwork newsletters --------------------------------------------------------------------- Tom Ensminger ensming@wpdis01.wpafb.af.mil Program Coordinator Computer Accomodations Program Air Force Material Command "Prol work is dangerous" Wright-Patterson AFB, OH Last Day @ work = 30 Dec 2001 --------------------------------------------------------------------- (4) ===== Is ALS Hereditary? ========== sci.med >From : pjh@pjh.jvnc.net (Pete Holsberg) Subject: Is ALS Hereditary? A friend's father died from ALS several years ago and today she expressed the fear that she might be more predisposed to developing the same disease. What is the likelyhood of a person like her developing ALS? How about a person with no relatives having it? Thanks. ----------------------------- Pete Holsberg 44 Lopatcong Drive Ewing, NJ 08638 FAX: 609-589-3218 pjh@mccc.edu pjh@pjh.jvnc.net ----------------------------- sci.med >From : sharon@cmhcsys.com (Sharon Mech) Subject: Is ALS Hereditary? As I understand it, (and my mother died of ALS 4 years ago), they think that only about 5 - 10 % of ALS and ALS-like disorders are genrtic. If your friend has NO OTHER relatives who died of neuromuscular diseases, she is likely at no greater risk than the average person. As far as what that risk is, although ALS seems to be on the rise, your chances of getting it are vanishin. Best wishes to you & your friend, Sharon Mech sharon@cmhcsys.com (5) ===== re: Stephen Hawking's Program ========== Date : 29 Sep 94 14:40:04 EDT >From : Peter Strugatz <73523.151@compuserve.com> Subject: Stephen Hawking's Program TO : rlambert@sipi.usc.edu (Russell Lambert) WORDS PLUS INFO IS: Words+, Inc. PO Box 1229 Lancaster, CA 93535 805-949-8331 (6) ===== Internet support resources? ========== X-Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Date : Wed, 28 Sep 1994 08:25:18 -0400 (EDT) >From : "C. K. Powell" Subject : Internet support resources? Hello-- We are seeking your assistance in identifying Internet resources related to helping people cope with major illness, physical loss, bereavement or grief. Our goal is to produce a guide (in both ASCII and HTML formats) to emotional support resources on the Internet. This guide will be published in December 1994 in the University of Michigan's Clearinghouse for Subject-Oriented Internet Resource Guides, available at URL: http://http2.sils.umich.edu/~lou/chhome.html We are interested in any form of Internet resource, including: newsgroups, newsletters, discussion groups, BBS's, gophers, WorldWideWeb pages, or ftp sites. Also, if you know of any individuals who are familiar with this topic and its resources, please forward their addresses to us. We are already familiar with the Psychology & Support Groups Newsgroup Pointer by John M. Grohol (which has been crossposted to a number of newsgroups); the Disability-Related Resources guide in the University of Michigan Clearinghouse; and the GriefNet gopher from Rivendell Resources. We hope that our guide will be a valuable tool to those seeking support in situations of bereavement or physical loss. Many thanks for your help in this project. #-#-#-#-#-#-#-#-#-#-#-#-#-# Please respond to: support-guide@umich.edu #-#-#-#-#-#-#-#-#-#-#-#-#-# C.K. Powell and J.R. Juhnke School of Information and Library Studies University of Michigan ===== = Along these lines, the current issue (OCT 94) of BOARDWATCH MAGAZINE = (Guide to OnLine Information Services and the Internet) mentions that = there is an e-mail service for those contemplating suicide. = For info send a message to: jo@samaritans.org ===== (7) ===== Some paralysis reversed in animals ========== By LIDIA WASOWICZ UPI Science Writer SAN FRANCISCO, Sept. 26 (UPI) A protein that reversed stroke-caused paralysis in animals may restore brain cell function and may lead to a treatment for some neurological disorders, researchers said Monday. Reporting in the journal Experimental Neurology, the University of California, San Diego, School of Medicine, scientists said the small protein, sAPP a product of the large protein APP, involved in regulating brain cell growth and survival reversed paralysis caused by stroke in animal studies. The protein potentially also may lead to a treatment for such neurological problems as Alzheimer's disease, the scientists said. In the latest study, Saitoh and his team infused rabbits with sAPP 20 minutes before inducing stroke and once daily for three days following the stroke. Other animal groups received no treatment or a treatment with a placebo after the stroke. In rabbits with paralyzed hind legs, those that got no treatment remained unable to move. Of those treated before and after the stroke, half regained some movement. And Saitoh noted an increase in the sprouting of new brain cell connections in this group. (8) ===== re: Sources of info on multifocal motor neuropathy? ========== >From : jzisfein@pipeline.com (Jim Zisfein) Newsgroups: sci.med Subject : Re: Sources of info on multifocal motor neuropathy? Date : 29 Sep 1994 20:57:20 -0400 sawtelle@stonecutter.com (Don Sawtelle) wrote: >I would like to hear from anyone who knows sources of information on >"multifocal motor neuropathy." (Most specifically, "multifocal motor >neuropathy with conduction block.") This is a variant of a more common disease called "chronic inflammatory demyelinating polyneuropathy", which is a slow variant of Guillain-Barre syndrome. In MMN or CIDP, there is stable or fluctuating weakness of arm(s) and/or leg(s) which may be asymmetric or only affecting some muscle groups. Sensory nerves are less affected than motor nerves; sensory nerves are entirely spared in MMN. The condition does not have the relentless downhill progression of ALS, and must be distinguished from ALS. Neurologic evaluation and EMG are mandatory for diagnosis. Treatment includes corticosteroid medication and other drugs or treatments that affect the immune system. IMO treatment is not necessary in all cases; I tend to watch the cases of mild or moderate severity, particularly when they are stable. Dr. Alan Pestronk and colleagues have done a lot of the research in this area. If you have access to MEDLINE, you can keyword by author to get some abstracts. Jim Zisfein (9) ===== B complex Megadose ========== Topic 561 B complex Megadose bionet.neuroscience 11:48 AM Oct 2, 1994 acampbell@achc.demon.co.uk ryacht@stu.rpi.edu writes... >Can harm be done to the CNS by taking megadoses of B complex vitmains? >I'm talking about taking 6 or 7 B-100 capsules, which contain at least >100mg of each B vitamin, plus some choline and other factors. Yes, it is is certainly possible to cause neurological damage by taking excessive doses of vitamin B complex. Incidentally it may also be undesirable to take "megadoses" of vitamin C, especially for the elderly or sick, since such people may have large iron stores and these interact with vitamin C to generate free radicals and thus increase oxidative damage. ("Nothing too much", as the Classic Greek saying has it...) Anthony -------------------------------------------------------------------- Anthony Campbell London UK email: acampbell@achc.demon.co.uk or acampbell@cix.compulink.co.uk -------------------------------------------------------------------- === end of als 130 ===