Date: Wed, 27 Sep 95 01:04:42 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD217 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#217, 26 September 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 == == 1040+ 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 == =============================================================== == Back issues of the ALS Digest are available on-line at: == == http://http1.brunel.ac.uk:8080/~hssrsdn/alsig/alsig.htm == =============================================================== CONTENTS OF THIS ISSUE: 1 .. Riluzole / Calcium 2 .. Slow onset of symptoms 3 .. amyotrophic lateral sclerosis 4 .. postdoctoral research - ALS 5 .. seeking contacts with PALS 6 .. information 7 .. ALS - Parkinsons - Alzheimers ... any connection? 8 .. Neuro-Notor Research/Where? 9 .. New WWW Neurobiology Site 10 . need info on ALS! 11 . New drugs for amyotrophic lateral sclerosis (Riluzole)? 12 . ALS question 13 . ALS & Dental Materials 14 . re: dental materials 15 . HTLV-I massociated myelopathy in Natives 16 . Version 5 - Internet Guide (1) ===== Riluzole / Calcium ========== Date : Tue, 26 Sep 1995 22:23:43 +0100 >From : killeen@iol.ie (Steve Killeen) Subject: Riluzole / Calcium Just to let people know that here in Ireland, the Minister of Health, has approved an early access programme for MND patients in Ireland. It should be released on a named patient basis within the next two weeks. Good news for us all!! And please God it will be of enormous benefit to us all, and even it is not a magic bullet, it will be a springboard to IGF or something else. One thing which I would like to cast out in the net is Calcium metabolism disorder!!. Calcium is a nerve soother. Lack of Calcium can make you jittery. I've had Calcium levels checked in my blood and Thyroid..they're not outside the limits, but they're just tipping the upper limit. I'm told that this is OK but I've got a theory about it. An x-ray also indicated calcification of the prostate. An other ALSer has kidney/gallstone problems. What if the blood or other areas/organs are "borrowing" calcium from the nerve channels, thus causing unease, jitteriness, fasciculations, fibrillations in nerves and muscles. Think of an analogy with Osteoporosis. Calcium is borrowed from the bones..why not borrowing from the nerve sheath. Look at the bones involved. Limbs, Chest! Just as ALS patients are affected in their Skeletal muscles. It may be only appear to be a minor abberation in blood Calcium levels, but perhaps over a long period of "borrowing" damage is done to the nerves. Steve Killeen (2) ===== Slow onset of symptoms ========== Date : Mon, 25 Sep 1995 22:07:48 -0700 >From : jwallis@Direct.CA (John Wallis) Subject: Slow onset of symptoms I have been receiving the ALS digest for 6 months now, and I've really wanted to write this letter for some time. I'm very interested to see if anyone out there suffering from ALS has had a similiar experience to what I've gone through. I began very vague symptoms of this disease in march of 1993, it started out with some sporadic fatigue in my right leg, but the key being these muscle twitches. I was having easily 50 - 100 all day long, everywhere on my body. I also noticed that sterenous activity brought increased fatigue. In the first few months I also noticed a slight change in my swallowing. The doctors at this point gave me nothing, but I could feel a change was taking place in my body. I did some research on my own and found these muscle twitches were called Fasiculations, and that they were prevalent in ALS. Further in the quantity I get fasiculations it was almost exclusive to this disease. I requested to see a neurologist, and when I was checked out the only unusual thing they could find was hyper-reflexive muscles. In the next 19 months the weakness in right leg progressed and my right hand and arm and recently shoulder. I still can use everything but my right hand is tight and i must make a concerted effort when walking. I have had 3 emg's done, the last 11 months ago with no unsual signs. In the last 6 months I now see atrophy. The thing is I can still do just about everthing (except sports or anything sterenous). In Fact I recently started a new job (non-manual) but it's now getting hard!. Nobody believes me due to the doctors not giving a diagnosis and now it's getting tough. I just need to know if anyone out there has had a similiar difficulty with a slow onset of symptoms, or not getting results from an EMG. I'm only 28 years old, and if this is ALS I must be thankful of the slow onset. I'm not looking for a diagnosis over the internet, but it would be nice to hear from anyone with anything similiar. My E-mail is jwallis@direct.ca Thanks.. John Wallis ================================================================== ==================== CYA L8R JOHN WALLIS ==================== ================================================================== (3) ===== amyotrophic lateral sclerosis ========== >From : demojenise@aol.com (Demojenise) Newsgroups: sci.med.nutrition Subject : amyotrophic lateral sclerosis Date : 17 Sep 1995 19:01:42 -0400 My uncle has this disease. My mother asked me to find out if anything can help him. I found these amino acids recommended in a book I bought. (valine, isoleucine and leucine.) My question is this. If I tell him to take these amino acids will they have any adverse side affects? Also, could you tell me if this is Lou Gehrig's disease? Thanks for your help, Carolyn (4) ===== postdoctoral research - ALS ========== >From : "James Tonra [Neurobiology]" Date : Wed, 20 Sep 1995 18:14:44 EST Subject: postdoctoral research - ALS I am currently completing my Ph.D. at SUNY at Stony Brook and I am very interested in becoming involved in ALS research. I am contacting you to inquire for any information about where I could look for postdoctoral research positions in this field. Thank you for your time. Sincerely, James Tonra (5) ===== seeking contacts with PALS ========== Date : Mon, 18 Sep 95 20:25:22 UT >From : "Marc Herman" Subject: ALS I have been diagnosed with ALS and would like to communicate with others of the same diagnosis. (6) ===== information ========== >From : fmv@romac.com Date : 20/09/95 17:49 Subject: information My father has recently been diagnosed by a neurologist as having ALS. Obviously this is a tragic and difficult time for him and me. I am searching for hope, since a cure or treatment is not a real alternative. I understand that this disease strikes a very small number of the population and would be interested in the number of people who are misdiagnosed as having ALS and have either a less severe form of sclerosis or a disease that has similar symptoms. My father's symptoms are not very apparent, but he has experienced weakening of the left leg, some twitching and cramping at night. He has gone through a full series of MRI's, but I am yet to see the empirical data that backs up the physician's opinion. My next question is: is there indeed empirical data that makes it cut and dried that someone has this? or is it basically through interpretation of the collected data by the physician is a diagnosis arrived at? Either way any information would be appreciated. My father would also like to volunteer for any clinical trial or study that may help find a treatment or cure for ALS. (He is 54 years old) Respectfully, F. Michael Valenti Post Office Box 316 Tampa, FL 33606-0316 813 259 2710 (office) 813 274 4987 (voice mail) 813 229 1954 (home) (7) ===== ALS - Parkinsons - Alzheimers ... any connection? ========== Date : Tue, 19 Sep 1995 09:33:00 -0400 >From : "steve (s.h.) goslen" Subject: My father was diagnosed with ALS in April 1994. My fathers brother died of Parkinsons, and I'd like to know if there is any relation between it and ALS. My Dad also has symptoms of Alzheimers such as memory loss, which is not supposed to take place in ALS folks. Is there any connection there? I'm also interested if there is any relation between ALS and vitamin B12 deficiency. Thanks Steve Goslen (8) ===== Neuro-Motor Research/Where? ========== Newsgroups: bionet.neuroscience: >From : ik93@sol.acs.unt.edu (Leach Shannon) Subject : Neuro-Motor Research/Where Date : 21 Sep 1995 18:17:29 GMT I am not certain if this is the right group, but ... How would I find where or who is doing research on neurological changes based on motor activity? shannon ik93@sol.unt.edu (9) ===== New WWW Neurobiology Site ========== Newsgroups: bionet.neuroscience: >From : philip_san_filippo@fishmailserver.neuro.mssm.edu : (Philip San Filippo) Subject : Re: New WWW Neurobiology Site Date : Fri, 22 Sep 1995 09:14:49 -0500 In my previous posting, there was a small (though vital!) typo in the Web Site address: The correct address is as follows: http://www.mssm.edu/neurobio This is to announce the World Wide Web site of the Mount Sinai School of Medicine's Dr. Arthur M. Fishberg Research Center for Neurobiology Department Profile Research in this center seeks to understand the anatomy and pathology of the nervous system as well as the molecular and cellular mechanisms of neuronal function. Collaborations with clinical departments focus on the mechanisms of aging and of psychiatric and neurologic diseases. 1) the neuroendocrinology of stress feeding reproduction 2) expression of genes for neural growth factor and growth factor receptor 3) the distribution of neurotransmitters and their receptors in the cortex 4) the molecular and cellular defects underlying schizophrenia and Parkinson and Alzheimer diseases Our address on the Web is: http://www.mssm.edu/neurobio Any helpful suggestions, comments, etc. concerning these pages would be appreciated. -Philip San Filippo Macintosh LAN Manager (10) ===== need info on ALS! ========== Newsgroups: bionet.neuroscience: >From : qx02197@inet.d48.lilly.com Subject : need info on ALS! Date : 22 Sep 95 17:09:56 EST My step father-in-law was recently diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig's Disease). Can anyone point me to recent review articles dealing with ALS etiology, treatment, prognosis, etc.? Also, any info directed at non-scientists would be appreciated, since I plan to forward the material on to my step father-in-law. Thanks for any info that may be forthcoming. Steve (11) ===== New drugs for amyotrophic lateral sclerosis (Riluzole)? ========== Newsgroups: sci.med: >From : dreisman@zedat.fu-berlin.de (Dr. Ludger Dreismann) Subject : New drugs for amyotrophic lateral sclerosis (Riluzole)? Date : Tue, 19 Sep 1995 09:33:07 GMT I have heard that there are new drugs (Riluzole?) which show promising results in the treatment of amyotrophic lateral sclerosis? Is that true? Does anyone know anything about it? (Literature?) Thank You very much! Ludger Dreismann (12) ===== ALS question ========== >From : c.yberdoc@magnet.at (Robert G. Hauk) Subject: ALS Question Date : 25 Sep 1995 22:35:43 GMT Hello from Vienna, For a friend of mine, who asked me a favour I would like to ask about the different treatment methods, if there are any, for ALS. She has it since 1988 and is without a clue. As I don't know anything about this disease, except the medical symptoms, I would be happy to hear about treating opportunities. Thanx in advance Robert Hauk ---------------- (13) ===== ALS & Dental Materials ========== Date : Wed, 6 Sep 1995 08:05:52 -0600 Subject: ALS & Dental Materials >From : rockware@rockware.com (David McEachran) I would like to comment on the article in #214 about ALS and dental materials. I have had ALS for almost 3 years. Initially, I had only bulbar symptoms, but since the beginning of 1995, the disease has moved into the rest of my body, greatly affecting all of my limbs. In my fervent search for alternative remedies, or anything that would stop the disease, I came upon information about mercury amalgam fillings and their role in many chronic diseases. Subsequently, I decided to have my amalgam fillings removed. I went to a holistic dentist that specialized in this, and had worked with Dr. Huggins for many years. Thus, the proper protocol was followed with respect to electrical charge and filling removal. In addition, I went to an osteopathic doctor for detoxification treatments using Dimaval (DMPS) to remove any mercury that may have accumulated in my body. I also followed many of the tips from Huggins' literature concerning vitamin supplementation and diet. I completed the treatments about 3 weeks ago. Although it has only been a short period of time, I have seen no affect on the progression of the disease. My condition continues to worsen. In addition, the Dimaval treatments made me ill; either from an allergic reaction to the drug, or from the release of mercury. I have not tried the cavitation procedure. Be aware that it is minor oral surgery, not a five minute procedure. It involves drilling into the jaw bone to the site of the hole. Last week the Colorado state attorney general charged Dr. Huggins with negligence, abandoning patients and providing substandard care. (Denver Post, August 30). He continues to practice pending a hearing. I do not want to discourage people from investigating this procedure. But be aware that it is very controversial, and may cost a lot of money. If my condition improves within the the next few months as a result of having my mercury fillings removed, I will be sure to let everyone know! RockWare Inc - 2221 East Street - Suite 101 - Golden, CO 80401 USA - Phone: 303-278-3534 - FAX: 303-278-4099 - rockware@rockware.com (14) ===== re: dental materials ========== BYLINE: NEWSMAKER OF THE WEEK DATE : 09/03/95 SOURCE: Denver Post Dr. Hal Huggins, the Colorado Springs dentist who a decade ago achieved notoriety for claiming mercury-based fillings were the root cause of everything from high blood pressure to seizures, faces charges that his treatments were "a sham, illusory and without scientific basis." Huggins, who has a national following for his radical views on "amalgam" fillings, was charged last week by the state attorney general with negligence, abandoning patients and providing substandard care. Huggins is accused of prescribing drugs - including diabetic insulin - that have nothing to do with dentistry and that only a medical doctor should prescribe. He also allegedly told patients that removing their fillings would solve incurable diseases. And he's accused of using unorthodox methods, including vitamin purges and meters to measure electrical current in the mouth. < parts deleted > Huggins, who has written numerous books on the subject and has given popular lectures to dentists and patients, said authorities "either have to kill me off or this information has to come out." < parts deleted > The case will be heard in court this fall. (15) ===== HTLV-I massociated myelopathy in Natives ========== Date : Mon, 25 Sep 95 23:39:09 -0400 Subject: HTLV-I massociated myelopathy in Natives >From : oger@unixg.ubc.ca (Dr Joel Oger) To all Neurologists but mostly those reidents of the NW Pacific States. I would be most interested to hear about any possible case of HTLV-I Associated Myelopathy in Natives (Aboriginals) Americans. It appears that this disease is endemic among Natives of the Pacific Coast (Alaskans and British Columbians) and that a few cases may have been seen in the SouthEast but Iwonder if there is any case among Plaines Indians. Clinically it is a progressive myelopathy with major bladder dysfunction, back pains and dysesthetic pains. Spasticity with motor deficit is prominent. The CSF shows a few cells and positive oligoclonal bands. A differential is progressive MS. I would appreciate any contribution to this. Thanks Joel Oger MD FRCPC Neurology UBC 2211 Wesbrook Mall Vancouver BC V6T 2B5 Canada Tel 604 822 7696 Fax 604 822 0758 (16) ===== Version 5 - Internet Guide ========== Date : Mon, 25 Sep 1995 13:05:39 -0600 Sender : CNET - Speech Language Diagnostics Dilemmas : >From : KUSTER@VAX1.MANKATO.MSUS.EDU Subject: Version 5 - Internet Guide I am pleased to announce Version 5 of the I-Guide Net Connections for Communication Disorders and Sciences is now on-line. Version 5 includes 24 changes/additions to subscribed discussion forums, 1 change in news- groups, 7 in electronic publications, 3 in gopher, 3 in FTP sites, 2 telnet, 78 in www changes and 49 additional college/university programs that have on-line access. I am also VERY pleased to announce that Judith Anderson liaison librarian to the Communication Sciences & Disorders Department at James Madison University has completed the monumental task of putting the I-Guide into html format, linking all the addresses in the I-Guide with hypertext links. All information from the latest edition (version 5) is included in this html version. The html version will be updated along with the ASCII version in January. Both ASCII and html can be accessed through the UMich Clearinghouse which provides links to both the ascii and hypertext version. The URL is: http://www.lib.umich.edu/chouse/inter/114.html They can also be accessed through my homepage on Communication Disorders located at http://vax1.mankato.msus.edu/~kuster/Welcome.html For those without access to the World Wide Web, the ascii version is still available 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 (if all else fails, write to me and I'll send you an email copy - but should warn you that it is long - about 180K. I am very grateful to Judy for her significant work in completing the hypertext version and her willingness to help keep it current. It would also be nice to let Judy Anderson know you appreciate what she has done for all of us! (andersjl@vax1.acs.jmu.edu) Judy Kuster kuster@vax1.mankato.msus.edu === end of als 217 === ALS Association (National Office) 21021 Ventura Boulevard, Suite 321 Woodland Hills, CA 91364 USA TEL 818-340-7500 FAX 818-340-2060 TEL 800-782-4747 (Patient Hot Line) E-M eajc27b@prodigy.com ALS Society of Canada 220 - 6 Adelaide Street East Toronto, Ontario, M5C 1H6 CANADA TEL 416-362-0269 TEL 800-267-4ALS (toll-free in Canada) FAX 416-362-0414 E-M alssoc@inforamp.net