Date: Mon, 20 Mar 95 01:05:12 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#180 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#180, 19 March 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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 == == 570+ 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 .. Editorial 2 .. als-talk 3 .. re: some questions (ALSD179) 4 .. Hereditary Defect 5 .. What Causes ALS ??? 6 .. neurodegenerative disease 7 .. Genome Project & Computer Science 8 .. re: Managing Swallowing Problems with Alcohol 9 .. On-line medical advice: fast and free, but beware 10 . updated guide to Internet med resources 11 . Neurogenetics Workshop (1) ===== Editorial ========== Again, some of your notes did not make this issue ... but they will. The next issue comes in a couple of days. (2) ===== als-talk ========== The new unmoderated e-mail list "als-talk" has been set up. It still needs some work but interested folk my join by sending e-mail to: majordomo@mailer.fsu.edu on the first line of your message, write: subscribe als-talk To send messages to the list, please send to: als-talk@mailer.fsu.edu To learn more about the system, send to: Majordomo@mailer.fsu.edu type "help" but without the quotes. More on this later. (3) ===== re: some questions (ALSD179) ========== Date : Sat, 11 Mar 95 18:15:01 -0500 >From: "Dr. Kenneth Fischbeck" To : "Mark Walter" > Do most patients with lower motor neuron disease later develop upper > motor neuron signs? And at what point if they have not (1 year , 2 > years etc.) would you think they will not ? Also can anyone tell me > is adult Progressive Muscular Atrophy now considered to be a variation > of ALS or a separate diagnosable disorder? Patients with only lower motor neuron involvement should be carefully evaluated and followed to make certain that they don't have multifocal motor neuropathy (a treatable inflammatory disease of the motor nerves) or some other disorder which may resemble ALS. Until upper motor neuron signs develop, I think it is always an open question as to whether you have ALS or something else. K. Fischbeck, M.D. Univ. Pennsylvania (4) ===== Hereditary Defect ========== Date : Mon, 13 Mar 1995 08:48:34 +0100 >From : cerebus@fub46.zedat.fu-berlin.de (Anna-Sabine Ernst, Gerwin Klinger) Subject: Hereditary Defect Are there any studies on ALS as an hereditary defect? Gerwin Klinger cerebus@zedat.fu-berlin.de (Germany) (5) ===== What Causes ALS ??? ========== Date : Fri, 10 Mar 1995 02:19:22 -0500 (EST) >From : WECK0820@duq3.cc.duq.edu Subject: What Causes ALS ??? My mother was just recently diagnosed with ALS in January of 1995. Before being diagnosed with this disease by her neurologist, her blood was tested and her urine was tested for heavy metals. She was also given an EMG and an MRI scan of the cervical region and the brain. The result of the EMG was consistent with motor neuron disease. This was stated in a letter sent to my mother's primary physician by a doctor who interpreted the test results. The MRI scan showed some degeneration in a disk and a small herniation in a disk. Because of the location of the herniated disk, it was not suspected as causing any of my mother's symptoms. My mother's symtoms were a weakness and wasting of muscle in her right hand, spacticity in her legs, and a twitching in her muscles. When another neurologist told us that the initial diagnosis of my mother was correct, I began to wonder what could have caused my mother to get ALS. I also began to think that maybe it was possible that the neurologists overlooked something, and maybe something else was causing my mother's ALS-like symtoms. ALS is considered to be either sporadic or familial. The familial form is rare and only about 5% of the people who get ALS inherit the mutated gene that causes the disease. The rest of the people who get ALS usually have the sporadic form. In other words, they did not inherit the mutated gene that causes the disease. Therefore, the gene must have been mutated by some environmental factor. I am hypothesizing that my mother contracted ALS through some environmental factor or agent because she has the sporadic form of the disease. In the following paragraphs, I will describe certain environmental factors I believe could possibly have caused my mother to acquire ALS. I know that I may be stretching it a little bit on some of these, but since there is no know cause of ALS, anything and everything should be suspected. The first environmental factor is the fact that the house my mother lives in is 85 years old and for 11 years, the house's water supply came from a well. Therefore, my mother drank well water for 11 years. Approximately 2 years ago, the house was connected to the municipal water supply and that is what she has been using since for drinking water. My question is, could heavy metals in the water have caused my mother's condition. My mother's blood was tested for mercury, lead, and arsenic, but the results showed low levels of these metals. I believe that whatever metal or substance was in the well water could either have caused ALS in my mother or have caused her current symtoms to appear now. Since the house my mother lives in is very old, 85 years, I believe that the cellar could be the culprit. My mother spent a lot of time in the cellar washing clothes. The paint on the walls in the cellar has been falling off for years and the mortar from the foundation is very loose and falls off very easily. The dust from the mortar lays near the walls of the cellar. Therefore, my mother has been breathing in these dust particles from the mortar and paint for more than 13 years. I do not know what metals or toxic substances are in these and I would like to know if these could be causing my mother's symtoms or ALS. Another factor I am looking at is the fact that my mother has used alumnimum pots for cooking for about 5 years. I have read that this metal could be toxic to the nervous system, but I have not found anything relating to whether or not it causes symptoms that are related to ALS. A coincidence that we discovered was the fact that my mother's first symtoms occurred following the spraying of a next door neighbor's lawn by a professional service. During the early spring of 1994, our new neighbor had his lawn sprayed and fertilized. Before our new neighbor had moved in, the house had been abandoned and no one had lived there for years. During the late spring and early part of the summer of 1994, my mother experienced a slight weakness in her right hand. This was her initial symptom. Our kitchen window, which faces our neighbor's property, is usually open during the spring and I believe it was open then. My mother did spend a lot of her time in the kitchen area. Could these chemicals have anything to do with my mother's symptoms or ALS diagnosis? Other factors that I believe could be important: 1). My mother has had a dog for 13 years and a cat for about 10 years. Both animals are outside most of the day during the warmer months. The cats litter box is kept in the cellar. Can pets cause any of the symptoms my mother is experiencing? 2). Deer also roam through my mother's neighborhood at night. Could Lyme disease cause my mother's symtoms? 3). My mother lived in close proximity to steel mills when she was growing up. She told me that she had lived close to steel mills for the first 27 years of her life. She also told me that soot or dust particles from the mill could be seen every morning on the windows of cars. Any connection to acquiring ALS? 4). My mother has also used hair coloring for about 25 years. She just recently began going to her hairdresser to have it done there. They use a more powerful chemical to color hair than my mother usually used. Do the chemicals in hair color have any connection with ALS or the symptoms that my mother has? 5). Within the past 5 years, my mother has lost 5 close relatives. Her mother to heart disease, her brother to suicide (he had mental problems), her mother-in-law to cancer, her uncle to cancer, and her aunt to heart disease. Within this time period, my sister disappointed my mother my dating someone she disapproved of for a few years. This made my mother very upset for a long time. Can emotional upset and trauma in ones life cause a disease such as ALS by depressing the immune system? 6). My mother was convinced that a vitamin deficiency is causing her symptoms. She was shown to have a low level of B12 after the results of a blood test came through. Her doctor prescribed B12 shots and brought her up to normal. My mother still insists that she could have a B12 deficiency because she read that some people cannot absorb the vitamin or a high level of folic acid masks a deficiency in B12 even though the level looks normal on a blood test. Could my mother be right? How do they test for these occurences? Any advice, suggestions, questions, or comments regarding what I have discussed above will be greatly appreciated. Please send responses to: Weck0820@duq3.cc.duq.edu By the way, my name is Brian. Thanks again for anything that you send. (6) ===== neurodegenerative disease ========== Date : Fri, 3 Mar 1995 18:43:35 -0500 Sender : Human Molecular Genetics >From : "Frank S. Zollmann" Subject: ANNO: ANNOUNCEMENTS 9/95 < parts deleted > >From : ASCBINFO Subject: ASCB/EMBO Neurodegenerative Mtg Fourth Joint American Society for Cell Biology/ European Molecular Biology Organization Conference TITLE: CYTOSKELETAL PROTEINS AND NEURODEGENERATIVE DISEASE ROBINSON COLLEGE, CAMBRIDGE, U.K. August 5-10, 1995 Organizers: Lester Binder, Molecular Geriatrics Corporation, Lake Bluff,IL Michel Goedert, Medical Research Council, Cambridge, U.K. The fourth joint American Society for Cell Biology/European Molecular Biology Organization conference will examine the contributions of cytoskeletal abnormalities to neurodegenerative disease. The format is designed to acquaint members of the basic science community with the involvement of specific proteins in disease processes and to afford clinical scientists the benefit of the latest cell and molecular biological findings regarding the proteins of interest. The diseases covered will include Alzheimer's Disease, Amyotrophic Lateral Sclerosis, ============================= Stroke, Lewy Body Disease, Prion Protein Diseases, Multiple System Atrophy and Inclusion Body Myositis. The biology and pathology of microtubule and intermediate filament proteins in normal and degenerating nervous systems will constitute major foci of presentations and discussions. Invited presentations will be augmented by poster sessions providing more detailed coverage of individual topics. Meeting attendance will be limited to 250 participants. For a meeting application and call for abstracts contact Dorothy Doyle, American Society for Cell Biology, 9650 Rockville Pike, Bethesda MD20814. Tel: 301-530-7153; Fax: 301-530-7139; e-mail: ddoyle@ascb.faseb.org. Deadline for receipt of registration is April 28, 1995. (7) ===== Genome Project & Computer Science ========== Date : Fri, 24 Feb 1995 19:56:30 -0500 Sender : Human Molecular Genetics >From : "Frank S. Zollmann" Subject: ANNOUNCEMENTS < parts deleted > >From : Gotou Susumu Subject: International Symposium on "Genome Project and Computer Science" International Symposium on "Genome Project and Computer Science" Date: March 9-10, 1995 Place: Sanjo-Kaikan, Univ. of Tokyo Hongo 7-3-1, Bunkyo-ku, Tokyo 113, Japan Phone. +81-3-3818-3008 (10 mins. on foot from Hongo Santyo-me Stn., Marunouchi line.) Information: Human Genome Center Institute of Medical Science Univ. of Tokyo Secretariat of International Symposium Shirokane-dai 4-6-1, Minato-ku, Tokyo 108, Japan Phone. +81-3-5449-5611 Facsimile. +81-3-5449-5434 Email. sympo@ims.u-tokyo.ac.jp (8) ===== re: Managing Swallowing Problems with Alcohol ========== Date : 13-Mar-95 04:31 EST >From: Greg Trautman 72262.1664@compuserve.com Subj : Managing Swallowing Problems with Alcohol Bob, Please let the Digest readers know that alcohol and many of the medications that may be prescribed for people with ALS DO NOT MIX. Alcohol in combination with some medications may cause significantly more gaging, drooling, and bubbles et cetera. Before mixing alcohol with any medication please check with your doctor or at least read the warning label on your medication. Thanks, Greg Trautman medcom@alaska.net Compuserve: 72262,1664 (9) ===== On-line medical advice: fast and free, but be wary ========== Source: THE NEWS & OBSERVER of Raleigh, N.C. 03/12/95 Title : On-line medical advice: fast and free, but be wary Byline: Joe Graedon and Dr. Teresa Graedon Credit: King Features Syndicate Column: People's Pharmacy Do apple seeds contain a poisonous substance? Will Prozac ruin my sex life? Exactly how much caffeine is in soft drinks and pain relievers? Does melatonin relieve insomnia and prevent cancer? These are just a few of the questions being asked and answered on the information highway. E-mail medicine is changing the way people get answers to their health concerns. < parts deleted > Perhaps even more exciting is the possibility of linking up with hundreds or thousands of people who can trade information about specific conditions (diabetes, depression, cancer) or medications. < parts deleted > New therapies for devastating diseases are also shared. This has led to controversy. Last year, a few patients with ALS (amyotrophic lateral sclerosis), also known as Lou Gehrig's disease) began taking a new epilepsy medicine called Neurontin (gabapentin). They told others about it through a computer bulletin board and now, nearly a third of the ALS patients in this country are taking Neurontin, even though it has not been proven effective. This makes many neurologists nervous. Physicians worry that inaccurate or unsubstantiated information could prove hazardous. This concern is well founded because there is no way to police the information highway. < most of article deleted > Write the Graedons in care of King Features Syndicate 235 E. 45th St., New York, N.Y. 10017 (10) ===== updated guide to Internet med resources ========== Date : Mon, 13 Mar 1995 10:21:09 CST Sender : Anesthesia and Critical Care Resources on the Internet : >From : "A.J. Wright" Subject: updated guide to Internet med resources ANNOUNCEMENT: UPDATE OF AN INTERNET RESOURCE THE MEDICAL LIST A GUIDE TO INTERNET CLINICAL MEDICINE RESOURCES Version 2.3, 1 March 1995 Dr. Gary Malet, gmalet@surfer.win.net Lee Hancock, LE07144@UKANVM.CC.UKANS.EDU ******************************************************************** A March 1, 1995 update of The Medical List is now available from the Univ. of Michigan Clearinghouse for Subject Oriented Guides URL:gopher://una.hh.lib.umich.edu:70/00/inetdirsstacks/medclin:malet The Medical List is a database of clinical medicine Internet resources. This new and improved version categorizes resources by disease and specialty. It subcategorizes the resources as web or interactive resources. This new version lists more than 60 new entries. The Medical List gives text descriptions of resources, spotlights the more developed programs, and gives news and backround on Internet medical resource development. The Medical List is made available in a Mosaic, hypertext, Internet-linked format as "Medical Matrix". Medical Matrix is available at the URL: http://kuhttp.cc.ukans.edu/cwis/units/medcntr/Lee/HOMEPAGE.HTML *************************************************************************** Dr. Gary Malet |7 W 5th Street | "communication, Family Physician |Stockton, Ca. 95206 | search, Healthtel, Inc.-windows based |VOICE 209-466-6878 | delivery, medical telecommunications |FAX 209-466-0502 | networking" gmalet@surfer.win.net |Compuserve 72630.1535| *************************************************************************** (11) ===== Neurogenetics Workshop ========== Date : Sat, 18 Mar 1995 07:59:53 -0500 Sender : Human Molecular Genetics >From : "Frank S. Zollmann" Subject: ANNO: ANNOUNCEMENTS 11/95 ************************************************************************ >From: Manuel Graeber Subject: Neurogenetics Workshop 2nd WORKSHOP NEUROGENETICS IN GERMANY/ANNUAL MEETING OF THE GERMAN SOCIETY OF NEUROGENETICS, October 19-21, 1995, Munich, Germany. The meeting will be held at the Ludwig-Maximilians-Universitaet, Geschwister-Scholl-Platz 1, Munich. Main topics will include: Parkinson's disease, Alzheimer's disease, Genetics of X-linked Mental Retardation, Motor neuron diseases, Ataxias, ====================== Trinucleotide expansions in neurodegenerative disorders, and Craniosynostoses. Free oral and poster presentations will be given. Deadline for abstracts: June 1, 1995. Meeting languages: German and English. For information contact: Dr. M.B. Graeber Molecular Neuropathology Lab, Institute of Neuropathology, Thalkirchner Str. 36, 80337 Munich, Germany Tel. + 49 89 5160 5192, Fax +49 89 5160 5396 Email: LABMOLNP@neuropathologie.medizin.uni-muenchen.d400.de or Prof. Dr. U. Mueller Institute of Human Genetics, Schlangenzahl 14, 35392 Giessen Tel. +49 641 702 4145, Fax +49 641 702 4158 Email: ulrich.mueller@humangenetik.med.uni-giessen.de === end of als 180 ===