Date: Thu, 25 May 95 02:37:23 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD194 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#194, 24 May 1995) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ maladie de Charcot == == == == 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 == == 710+ 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 .. ask the experts/boston 2 .. New York Times article -- May 14/95 3 .. Neurontin/Gabapentin treatment of ALS 4 .. Myotonic Dystrophy 5 .. oxygen 6 .. T-cells igm & ALS 7 .. Jobs at AMGEN 8 .. MDA letter 9 .. Riluzole treatment 10 . Causal Factors of ALS 11 . Lou Gehrig Poster 12 . Saliva 13 . Net Connections for Communication Disorders (1) ===== ask the experts/boston ========== Date : Fri, 19 May 1995 10:49:33 EDT >>From : LLBD81A@prodigy.com (DEBRA BULKELEY) Subject: ask the experts/boston/part 1 of 4 ALS Experts discuss lastest research issues BOSTON, MA--Four of the region's top ALS researchers discussed current research, treatments, and the possible mechanisms that disrupt nerve cell communication with muscles during the Chapter's recent Ask the Experts conference held at Massachusetts General Hospital East in Charlestown. More than 120 people from throughout the Northeast attended the three-hour conference. It was an opportunity for patients and their families as well as health care professionals and others interested in ALS research to ask the experts questions. And the questions covered a broad spectrum, with topics ranging from one expert's perspective on the recent Riluzole trial results and possible causes of the disease to the polypharmaceutical approach to testing drugs for ALS. The panelists were Robert H. Brown Jr., M.D., D. Phil., Director of the Cecil B. Day Laboratory for Neuromuscular Research, Massachusetts General Hospital; Theodore Munsat, M.D., Director of Neuromuscular Research at New England Medical Center in Boston; Jeremy Shefner, M.D., Director, EMG Fellowship Program at Brigham & Women's Hospital, Boston; and Richard Gan, M.D., Assistant Chief of Neurology, Outpatient Clinic, Causeway Street Veterans' Hospital, Boston. subhead: "Multi-faceted disease" "There is a growing suspicion that ALS isn't a single disease but maybe is a multi-factorial disease within an individual," said Dr. Munsat. "That means that there may be more than one factor that leads to nerve death, and these factors may be different within different patients." While this thinking may appear to complicate treatment, researchers are now beginning to uncover new understandings of what causes the disease. "We currently know enough about the disease so we can slow it down. It appears the first drug to slow the course of the disease--Riluzole--may be approved by the FDA in the next year. This is a very important milestone," Munsat added. Riluzole is a glutamate blocker, and one hypothesis concerning the development of ALS implicates glutamate. Nerve cells use glutamate, a highly toxic chemical, to transmit signals. Proteins called glutamate transporters mop the glutamate up after it has been used to protect the cells from its toxicity. Some investigators found excessive amounts of glutamate surrounding nerve cells in patients with ALS; other ALS patients had too few glutamate transporters. Riluzole, made by Rhone-Poulenc Rorer Inc., blocks the release of glutamate from cells. The results of a trial of more than 1,000 ALS patients showed that the drug slightly prolongs the lives of ALS patients. "The important thing to take away from the Riluzole trial is that it didn't alter the rate of deterioration in strength and did not alter the quality of life," Dr. Munsat explained. "But with statistical analysis there seemed to be a modest improvement in survival in patients on drug as opposed to those on placebo." The results are significant since Riluzole has the potential of being the first treatment for ALS. Another cause of ALS was recently reported in an issue of the journal Nature. Researchers at Montreal General Hospital Research Institute in Canada found that they could reproduce ALS in mice by giving them an abnormal neurofilament gene. An abnormal gene found in some patients with familial ALS, which was discovered by researchers at Massachusetts General Hospital, produces an abnormal form of superoxide dismutase or SOD. Normally, this enzyme sops up highly reactive and damaging chemicals called free radicals. Munsat and Dr. Robert Brown of Massachusetts General Hospital, a discoverer of the mutated gene, are currently conducting a clinical trial in which a small subcutaneous pump will inject SOD directly into the spinal fluid of ALS patients. One question during the "question and answer" session raised the issue of whether ALS is a disease of the auto-immune system. "Many believe the progression doesn't depend on the immune system in any way, which doesn't mean the initial insult that triggers the disease may be auto-immune," responded Dr. Brown. Another issue raised was whether or not an undiscovered virus could be the cause of ALS. "I suppose it's always possible there is an undisclosed agent," said Dr. Brown. "Extensive studies have been done using at least conventional screening methods where active viral infections were taken from freshly harvested autopsy tissue from ALS patients and were inoculated to primates. With the exception of one study reported in Russia in 1962 and which no one else could repeat, there has never been a single study showing successful transmission of anything like ALS by the conventional biologic screening methods. That's pretty convincing data." subhead: Crossing the "blood-brain barrier" Whether or not certain drugs can cross the so-called "blood-brain" barrier will have an impact on clinical trial results. Many question whether or not some drugs, such as CNTF (recombinant human ciliary neurotrophic factor) and BDNF (brain derived neurotrophic factor), should be administered via an implanted pump in order to cross the blood-brain barrier. Dr. Munsat said he will be involved with a study of BDNF in which it will be administered in patients via a small pump that is surgically implanted in the patient. Dr. Shefner's clinic is completing its clinical trial of BDNF, and data is currently being analyzed, he said. The drug was administered subcutaneously. Dr. Munsat urged ALS researchers to speak out strongly regarding the polypharmaceutical approach to drug testing. "If two drugs are worthwhile to test individually, then they should be tested together," he said. "Some patients are doing this already. They are taking high doses of antioxidants while taking riluzole or neurontin. That's already a polypharmaceutical approach," he said. (2) ===== New York Times article -- May 14/95 ========== Date : Wed, 17 May 1995 08:55:07 -0500 (CDT) >From : Clive David Subject: New York Times article--May 14/95 For people who are looking for a succinct lay-person's view of ALS, a very nice summary appeared in last Sunday's "New York Times". Title is "Mystery is lifting on mechanisms of disease that killed Lou Gehrig"; author is Gina Kolata. ============================ Clive David E-mail: cdavid@worf.uwsp.edu ============================ (3) ===== Neurontin/Gabapentin treatment of ALS ========== Subject: Neurontin/Gabapentin treatment of ALS >From : philip.klisser@digitec.co.za (Philip Klisser) Date : Mon, 15 May 95 20:52:00 +0200 Organization: Digitec Online - South Africa ============ I would like to know if you or any ALS digest subscribers have any information relating to the use of Neurontin/Gabapentin. (I think it is manufactured by Park Davis) in the treatment of ALS Thanks Regards Philip Klisser philip.klisser@digitec.co.za ---- Digitec Online - South Africa Telnet: bbs.digitec.co.za (4) ===== Myotonic Dystrophy ========== Listname: "Muscular Dystrophy - Patients, Family, & Friends" : Date : Tue, 16 May 1995 22:21:35 +0100 >From : janron@pavilion.co.uk (Mr R Sharratt) Subject : Myotonic Dystrophy My wife has Myotonic Dystrophy. This has various symptoms - the worse being speech problems. There is also the problem of fatique made worse by Ptosis (drooping eyelids). Along with these things, there is weakness in the arms and legs which affects her ability to walk and do things. Most of these things she can manage, but the speech problem makes it difficult for people to understand her. As a result she is very isolated with what people she meets treating her as if she is somehow mentally handicapped when, in fact, she is an extremely intellegent woman. The local speech therapist ( we live in southern England) know little about the condition - in fact, most of them have never heard of it before. We wondered if anybody had found anything helpful for the speech problems connected with myotonic, or any other form of, Muscular Dystrophy Hope someone can help us. Jan and Ron Sharratt. (5) ===== oxygen ========== Date : 23 May 95 15:36:02 EDT >From : Mike Ward <72567.400@compuserve.com> Subject: oxygen All, I have been following these groups for years and have never seen anyone mention oxygen. Three years ago when I had a trach put in because of als, my doctor said he set the respirator up so my pCO2 would stay high to make it easier to come off the respirator. This turns out to be 850 cc volume and 8 breath per minute in assist control mode. My oxygen stats run 92% so he perscribed one liter of oxygen to bring me up to 95%. When off the respirator i use 4 liters in a mask over the trach. With oxygen I can stay off for four hours comfortably. With no oxygen I can stay off for a half hour maximum. By useing oxygen I can keep my lungs strong so I can see the value of his approach. Also not needing a respirator during my get up and bed routines makes things much simpler. My reason for bringing this up is i wonder if others have had similar experiences. It seems like this approach has a lot going for it but I find little mention of it even in Forbes Norris book. Mike Ward 72567.400@compuserve.com (6) ===== T-cells igm & ALS ========== >From : Kasirer Katherine Subject: T-cells igm & ALS Date : Tue, 23 May 95 08:59:00 PDT >From Dr P Kasirer to JV Wallace Dysimmune features may be found in classic ALS, but they should also raise the question of a form of neuropathy mimicking ALS such as chronic inflammatory demyelinating polyneuropathy or multifocal motor conduction defect. Furthermore, motor and other neuropathies may be associated with lymphoma. This too should be sought for as it is potentiallt treatable. Abbreviated references (please e-mail me directly for more detailed citations): Envoldson et al (March 1990); Younger et al (April 1990); Oh, Shin J (Aug 1990); Younger et al (1989); Pestronk et al (July 1988). ************************************************************************* ** Katherine Kasirer Stockshot Librarian National Film Board of Canada k.kasirer@nfb-onf.ca ************************************************************************* ** (7) ===== Jobs at AMGEN ========== Date : Tue, 16 May 1995 13:32:06 -0800 Sender : Biotechnology Discussion List >From : Roger Fachini Subject: Jobs at AMGEN REGARDING Jobs at AMGEN AMGEN has current job openings. Our job hotline is (800) 446-4007. If you find a position that you qualify for and are interested in, send me your resume and I can submit it with an employee recomendation. I can be contacted at (805) 447-8780, e-mail rfachini@amgen.com, or Roger Fachini MS 5-1-B, Amgen Center, Thousand Oaks, CA 91260-1789. (8) ===== MDA letter ========== Date : Wed, 17 May 1995 23:38:49 EDT >From : PDNS06A@prodigy.com ( D L BARBER) Subject: MDA letter I recently got a letter from my local MDA Patient Services Coordinator that could possibly be the shape of some things to come. The letter spoke of some difficult choices they have had to make to 'level off the Association's resources'. While we all know that money does not grow on trees, most of us are aware that this Association has hundreds of volunteers, and possibly a larger number of employees who are working for wages potentially below that of most of the private sector. Thank God for all of these MDA people (and all who who work for similar charitable networks), because they all have their hearts in the right places. If it were not for them, only you know what life would be like. With May being MDA month, please talk to all of your friends, to see if a couple of them would ask for donations at their workplace. My wife and I did, and averaged $5 per person, netting $243 in three days. Some companies will give in place of individial employee contributions, potentially netting a higher average. Any local MDA office can help you get bona-fide receipts to fill out, for any who donate, be it check or cash..... The MDA works better with all of our help!! (9) ===== Riluzole treatment ========== >From : theos@MIT.EDU Date : Mon, 22 May 95 18:34:16 -0400 Subject: Riluzole treatment Some time ago good results for a clinical trial of Riluzole were out. I would like to ask you if it is possible for someone to be voluntarily treated using this new treatment. I would really appreciate if you could send me information about what one has to do for this. A patient that I know in Greece is very much interested. ====== Sincerely, Theodoros Evgeniou (10) ===== Causal Factors of ALS ========== Date : Wed, 17 May 1995 11:41:22 -0400 >From : ingrid@fpa.com (Ingrid Spielman) Subject: Causal Factors of ALS My grandfather was diagnosed with Lou Gehrig's Disease approximately one year ago. His wife, and primary caretaker, has suggested a theory regarding the onset of this disease in my grandfather which my family thinks is worth exploring: My grandfather has had circulatory problems for several years. As a result of these problems, his doctors had initially prescribed Procardia. He began an additional drug treatment of Mevacor (to lower cholesterol), taken in conjunction with the Procardia, a few weeks before his initial ALS symptoms appeared; the pamphlet distributed with Mevacor has a prominent warning regarding possible muscle weakness and severe muscle breakdown. It is our understanding that the Mevacor treatment is supposed to be short-term only; my grandfather was kept on Mevacor (along with Procardia) for approximately seven months AFTER his symptoms appeared. My grandfather had been treated for his circulatory problems at Scot Airforce Base in Missouri; when the symptoms appeared (initially as loss of movement/muscular ability in his arm and shoulder) he was referred to the St.Louis University Spine Clinic. An ALS specialist through Barnes Hospital in St.Louis finally made the diagnosis of ALS, with the agreement of his other doctors. He was taken off both Procardia and Mevacor in February '95. He noticed an immediate, though not dramatic, improvement. My grandfather's muscular ability has all along degenerated at a much slower rate than his doctors have anticipated. In the few months he's been off the drugs, his condition has slowly worsened to the point he'd been at immediately prior to suspending the drug treatments, but has not degenerated beyond that point. Overall, he's somewhat weaker than before, but no significant decline has been noted in the past few months. His doctors were certainly aware that he was on Procardia and Mevacor when the diagnosis of ALS was made. My family is not *specifically* contesting the diagnosis. What we'd like to know is if there's a possibility that his ALS was chemically induced. Does anyone have any evidence, either anecdotal or scientific, of a causative relation between the drugs (especially Mevacor) and ALS? Could the drugs, combined, have contrived to mimic the natural onset of ALS? Has anyone else continued with a Mevacor treatment so long beyond the appearance of muscle breakdown side effects? If so, has anyone ever REGAINED muscle control after discontinuing the drug (i.e. are the side effects permanent, if so does the degeneration continue)? These questions are directed at all ALS digest subscribers; in addition, I will be cross-posting this to a heart disease listserv in the next few days (If anyone has any suggestions as to which one to post to, I haven't yet found an appropriate list.) Also, if Debra feels there's any merit to this theory, perhaps she could 'Ask the Experts' on the 30th? My family and I (particularly my grandfather!) would GREATLY appreciate any information we may receive. Please respond directly to me at my e-mail address: ingrid@fpa.com Thank you- Ingrid M. Spielman (11) ===== Lou Gehrig Poster ========== Date : 22 May 1995 08:19:29 U >From : Greg Smiley Subject: Lou Gehrig Poster This is not important as far as ALS goes, but I thought somebody might know where I can get a Lou Gehrig poster. I am in the process of moving to Dallas from California. On Friday night I went to "The Ballpark" in Arlington, Texas and saw a great Lou Gehrig poster. It had ALS as the "company" where one could get one. The poster had many different items of Lou's in kind of an antique looking picture. Does anyone have any ideas where I could get one? Thanks - Greg Smiley greg_smiley@gateway.cad.northrop.cad (12) ===== Saliva ========== Date : Mon, 22 May 1995 16:06:50 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: Re: A.L.S. Several weeks ago, I was having serious trouble sleeping due gagging on excessive saliva. Dr. KASARSKIS who runs the BDNF trial at University of KENTUCKY recommended a new drug called SAL-ATROPINE which is mfg by HOPE PHARMACEUTICALS at phone 714-556-4673 in Santa Ana CA. WORKS GREAT, 5 OTHER KASARSKIS ALS PATIENTS HAVE FAVORABLE RESULTS. JOE SNYDER (13) ===== Net Connections for Communication Disorders ========== Date : Thu, 18 May 1995 16:48:33 -0600 Sender : CNET - Speech Language Diagnostics Dilemmas : >From : KUSTER@VAX1.MANKATO.MSUS.EDU Subject: Internet Guide - version 4 Version 4 of the Internet Guide, Net Connections for Communication Disorders and Sciences is now available from the University of Michigan Clearinghouse. Access to the guide is available via Anonymous FTP, Gopher, and WorldWideWeb. anonymous FTP: host: una.hh.lib.umich.edu path: /inetdirsstacks/commdis:kuster Gopher: gopher.lib.umich.edu =>What's New and Featured Resources =>Clearinghouse... =>All guides =>Communication Disorders and Sciences; J. Kuster Gopher .link file: Name=Clearinghouse for Subject-Oriented Internet Resource Guides (UMich) Type=1 Port=70 Path=1/inetdirs Host=una.hh.lib.umich.edu Uniform Resource Locators (URL): http://http2.sils.umich.edu/~lou/chhome.html or http://www.lib.umich.edu/chhome.html or gopher://una.hh.lib.umich.edu/11/inetdirs Version 4 contains 122 additions or changes from version 3, and is about 145K in length (82 pages hard copy). All together there are over 400 references to different resources on the Internet which may be of interest to professionals and students in the fields of speech-language pathology, audiology, speech science, persons with communication disabilities or differences and their support persons. If anyone has additions, corrections or suggestions, I would appreciate hearing from you. Judy Kuster kuster@vax1.mankato.msus.edu === end of als 194 ===