Date: Sun, 13 Nov 94 18:55:18 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD146 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#146 13 November 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 == == 390+ 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 .. Neurontin question 2 .. Live Cell Therapy 3 .. Rett syndrome 4 .. fluid in the lungs 5 .. ALS 6 .. MDA's on-line conferencing about ALS 7 .. The ALPHA MEDIA Catalog 8 .. unorthodox treatments 9 .. Internet Health Related Resources 10 . Lou Gehrigs Disease-ALS (1) ===== Neurontin question ========== Date : Thu, 10 Nov 1994 13:46:35 +0500 >From : vprice@welchlink.welch.jhu.edu (VALERY PRICE ) Subject: Neurontin question I am trying to determine the most prevalent (or seemingly effective) dosage of Neurontin (Gabapentin) for ALS patients. My friend has sporadic lateral ALS in a pretty advanced stage, he was diagnosed in 1988. He was taking 300 mg. a day for a couple of months, then 600 mg. - for about the same period of time. We haven't noticed any improvements or slowing of the course of the desease so far... Does anyone have any idea, what dosage Dr. Munsat recommends to his patients? Sincerely, Val Price. (2) ===== Live Cell Therapy ========== Date : Fri, 11 Nov 94 09:51:50 PST >From : "Sarah Larson" TO: ALS Digest RE: Live Cell Therapy FM: Debbie Christopherson I am a 41 year old female who was diagnosed August 1990 with ALS. I spent two years before that going from doctor to doctor, two unnecessary surgeries to see what was wrong. As we informed family and friends we too learned of American Biologion in Tijuana. I went September of 90 and have gone every 6 months since then. My onset was my left side only and no bulbar problem. I continue to drive and am very mobile. I know live cell helps because I get worse at about 5 months just before I get to American Biologion at 6 months. I have a good energy level and notice a big difference after treatment. My progression is very slow and I have already beat all the medical textbook odds. I also strongly recommend physical therapy - it keeps your range of motion in tack and helps one compensate when necessary. Good Luck - Debbie Christopherson (3) ===== Rett syndrome ========== Date : Fri, 11 Nov 94 15:14:01 -0500 Sender : fischbeck@a1.mscf.upenn.edu >From : "Dr. Kenneth Fischbeck" To : rwerman@vms.huji.ac.il Cc : bro@huey.met.fsu.edu Subject: Rett syndrome In response to request for information about "Rhett's disease", which was posted 26 Oct 1994 on the ALS Digest, I have forwarded to you an article from OMIM (On-line Mendelian Inheritance in Man), a database for hereditary diseases. A good contact person who is doing research in this area is Dr. Huda Zoghbi at Baylor College of Medicine in Houston (hzoghbi@mbcr.bcm.tmc.edu). K. Fischbeck, M.D. Neurology Dept., Univ. Pennsylvania Philadelphia (fischbeck@a1.mscf.upenn.edu) (4) ===== fluid in the lungs ========== Date : Fri, 11 Nov 1994 00:26:16 -0500 >From : SPCC977@aol.com Subject: fluid in the lungs My father who is seventy and has been diagnosed with bulbar onset in May of 94 has just been told he has fluid in his lungs. I am curious to know how long one can live until the lungs completely fill up with fluid? Because I am about 2900 miles away and would like to be with him during his final week(s) I am trying to get an estimate of how long. I know if he is fortunate enough to remain germ free his chances will be better. The doctor did not tell him how much fluid he had, but this is the first sign of fluid yet. Any ideas out there? His physical condition has deteriorated rapidly since May, unbelievable how quickly his body is fading away in such a short time. We cannot understand his speech and he has had little interest in using his computer. Now his arms are useless. Anyways it is uplifting to check your newsletter and read about all that is taking place out there on this devastating disease. Bob you deserve a warm thank you from the world. SPC977@AOL.COM (5) ===== ALS ========== Topic 605 Subject : ALS Newsgroup: bionet.neuroscience Date : 1:28 PM Oct 25, 1994 > From : TDAILEY@DESIRE.WRIGHT.EDU The paper from Gurney et al., Science 264 (5166): 1772-5 (1994) Describes a motor neuron degeneration in mice that is expressed by a human Cu, Zn superoxide dismutase mutation. This apparently occurs in around 20% of cases with familial ALS. There is also a commentary in the same Science issue that might help you in obtaining previous literature. On the treatment side the paper by Mitsumoto et al., Science 265: 1107-1110 might update you in recent advances alleviating the motor neuron disease of the wobbler mice (a proposed animal model for ALS) using neurotrophic factors. Again the commentary in the Perspective section of the same Science issue is quite interesting. Francisco J. Alvarez (6) ===== MDA's on-line conferencing about ALS ========== === = Compuserve subscribers may join the MDA FORUM and participate in = such things as on-line chats. Here is a small sample of a session = on ALS. For information about how to join CompuServe please send = e-mail to Steve or Barry. rgds,bro === MDA ONLINE CONFERENCE (Edited Transcript) October 27, 1994 8:00 PM EDT "Everything and Anything About ALS" Hosted by Barry Goldberg and Steve Kish User ID Name ------------------------- ------------------- 74552.2240@compuserve.com Steve Kish 74431.2305@compuserve.com Barry Goldberg (2-1,Steve Kish) Barry, I read the message between you and Chris Davis regarding a drug called Allopurinol. This is the first I have heard this drug mentioned in relation to ALS. Do you have further info on this?/ (2-3,Barry Goldberg) All right, I'll start with that area... Dr. Appel in Houston has long believed that ALS... is an autoimmune disease... he has had his team working in this area and... for the last year or two he has been taking a... close look at the L - channel calcium blockers... last year he and the team isolated something interesting... in this area by trying to destroy motor neuron cells... and was successful in having an excess of calcium kill... that cell. He required some additional molecular photography... and an MDA grant provided what he needed to continue in that... study. Based on what he discovered, an excess of calcium due to. a problem with the cell seems to be a possible culprit. Apparently... Allopurinol has the effect of improving the capability of... the cell to block calcium and, since it is already an FDA.. approved drug for gout, a form of arthritis, he began... a trial. I'm taking two doses daily -- morning and... evening-- but don't know if anything is having an effect... yet. With me so far?/ (2-1,Steve Kish) Wow - good answer, I'm impressed! This is the type of info we all need./ (2-3,Barry Goldberg) I'm not through yet either, Steve... we actually have information on this research... in the files under one of the Research Reports... but I don't know which one at this point... I have a copy of the text of the MDA Research... symposium held in January. We are planning to upload it for all to see./ (2-1,Steve Kish) I think that kind of information would do well in our library/ (2-3,Barry Goldberg) BTW, there is a press release on the camera system... given to Dr. Appel's group under the press release... file area. I believe some of that basic information... is contained in there as well./ < the rest has been deleted > (7) ===== The ALPHA MEDIA Catalog ========== This catalog carries the subtitle, New Media Solutions for Better Medicine. Though the catalog is directed to professionals, it is also interesting for patients, family caregivers, support groups, etc. and it is free-of-charge. Also there is an offer to try US HEALTHLINK free for 30 days. US HEALTHLINK is an on-line service that gives you access to the MEDLINE, EMPIRES & CINAHL databases and it lets one keep informed via the Comtex Medical News Service and via UPI daily news postings. Not only that but US HEALTHLINK enables one to set up a clipping service such that new information added to EMPIRES, MEDLINE & Comtex that meets your text string criteria will appear in your mailbox! There are other services, for instance a document delivery service for the articles mentioned in the data bases. As a subscriber of US HEALTHLINK for the past year or so, I can tell you that it is not perfect ... but it is very much worth the $35/month that I have been paying. But see for yourself via the 30 day free offer. rgds,bro ALPHA MEDIA; P.O. Box 1719; Maryland Heights MO 63043-1719 TEL 800-832-1000; FAX 314-692-2031 (8) ===== unorthodox treatments ========== I suggest that those considering unorthodox treatments for ALS should read chapter 5 of the book AMYOTROPHIC LATERAL SCLEROSIS: A Comprehensive Guide to Management (Edited by H. Mitsumoto & F.H. Norris. 1994. Demos Publications; 386 Park Avenue South, Suite 201; New York NY 10016; TEL 212-683-0072; $40.00 paperback). Chapter 5 is written by Mark Glasberg MD, and includes a brief overview of such treatments as snake venom, Calcium- EAP (Dr. Nieper), Live Cell Therapy, Interferon/Sandostatin (Dr. Medenica), Ayurvedic Medicine (Dr. Chopra), Edgar Cayce Foundation, and others. rgds,bro (9) ===== Internet Health Related Resource Guides ========== PART (1) ===== Date : Fri, 11 Nov 1994 08:52:40 -0600 Sender : NURSENET - A Global Forum for Nursing Issues : >From : Richard Lee Holbert Subject: Interenet Health Related Resource Guides I have found on the net four Health/Medical Network Resource Guides. If anyone would like a copy of any or all of them, please e-mail me OFF of this list and I will send you the one(s) you want. The guides are as follows: 1)- Quick Information About Cancer for Patients and Their Families (LONG) 2)- Internet/Bitnet Guide for Health Sciences Resources (HUGE) 3)- Emotional Support: Physical Loss, Chronic Illness and Bereavement (LONG) 4)- Womens Health Resources on the INTERNET (LONG) These 4 guides show places on the Net where information can be retrieved and instructions. If I can be of any assistance to any list member, please let me know. Richard Lee Holbert ---------------------------------------------------------------------------- Richard Lee Holbert - Education Student/T.I.E. Consulting E-Mail: g_holbertrl@titan.sfasu.edu, rlh@tenet.edu Land Mail: 210 West Austin, #204 Nacogdoches,Texas 75961 AGGIE '85, K-12 Educational Computing Consultant, INTERNET Surfer, Genealogy ---------------------------------------------------------------------------- PART (2) ===== Date : Sat, 12 Nov 1994 12:26:54 -0600 (CST) >From: G_HOLBERTRL@TITAN.SFASU.EDU Bob: Do you want to post the URL so they can get it on their own if they wish? The URL is: Gopher: una.hh.lib.umich.edu Path: #12 Richard Lee Holbert PART (3) ===== Date : Sun, 13 Nov 1994 13:45:15 -0600 (CST) >From: G_HOLBERTRL@TITAN.SFASU.EDU I also have a file which tells people how to get stuff from GOPHER and WWW via e-mail. They could send me a message and I could send them the how-to file. Whatever you feel is best. Richard Lee Holbert (10) ===== Lou Gehrigs Disease-ALS ========== PART (1) ===== >From : navigatorr@aol.com (Navigatorr) Newsgroups: news.groups.questions Subject : Lou Gehrigs Disease-ALS Date : 12 Nov 1994 22:20:22 -0500 I'm looking for information on ALS such as recent articles and any breakthroughs in fighting the disease. Where on the net might I find this? Jeff PART (2) ===== >From : grobe@ins.infonet.net (Jonathan Grobe) Newsgroups : news.groups.questions Subject : Re: Lou Gehrigs Disease-ALS Date : 13 Nov 1994 03:44:55 GMT Organization: INS Info Services, Des Moines, IA USA In article <3a40lm$r5l@newsbf01.news.aol.com>, navigatorr@aol.com writes: > >I'm looking for information on ALS such as recent articles and any >breakthroughs in fighting the disease. Where on the net might I find this? > There is the general group: sci.med There is a mailing list: _________________________________________________________________ ALS Interest Group List Addresses * bro@huey.met.fsu.edu (list) * Bob Broedel (owner) DESCRIPTION (ALS=amyotrophic lateral sclerosis, or Lou Gehrig's Disease). This list has been set up to serve the world-wide ALS community. That is, ALS patients, ALS support/discussion groups, ALS clinics, ALS researchers, etc. Others are welcome (and invited) to join. Sorry, but it is not a LISTSERV setup. ------------------------------------------------------------------------- Jonathan Grobe grobe@ins.infonet.net ------------------------------------------------------------------------- === end of als 146 ===