Date: Sun, 22 Oct 95 21:02:55 -0400 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD220 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#220, 22 October 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 == == 1120+ 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 == =============================================================== == A full set of back issues (on MSDOS 3.5 INCH HD diskette) == == are available by sending me your full mailing address. == == International requests are welcome. Also, if you have == == already asked, it *is* all right to ask again. rgds,bro == =============================================================== CONTENTS OF THIS ISSUE: 1 .. ALS Digest Archive "READ.ME" File 2 .. re: Is ALS invariably fatal? 3 .. CYTOTHERAPEUTICS 4 .. A couple of inquires 5 .. Help with rare neurological disease 6 .. Help on ALS please 7 .. sleepless 8 .. info request 9 .. Television Show Needs Med. Stories 10 . Unusual Symptoms 11 . WHAT IF 12 . IBM Special Needs Solutions 13 . Chronic Illness URLs 14 . Response to John Wallis 15 . BDNF 16 . Toxic Oil Syndrome (1) ===== ALS Digest Archive "READ.ME" File ========== Date: Fri, 13 Oct 95 11:21:24 EST >From : Michael_Ronayne@prenhall.com Subject: ALS Digest Archive "READ.ME" File Bob, The two disks with the 1993, 1994 and 1995 ALS Digest Archives are on their way to you via first class mail and you should have them on Sat. or Mon. at the latest. The following is the "READ.ME" file which is on both disks. Mike <><><><><><><><><><><><><><><><><><><><><><><><><><><><><><><> To install the ALS Digest Archive on a DOS, Windows or OS/2 system, insert the ALS Digest Archive distribution disk in the "A:" or "B:" drive and type the following command: A:INSTALL A: C: or if you used the "B:" drive B:INSTALL B: C: If you want to install the ALS Digest Archives on a drive other than "C:" enter that drive letter as the second argument. For example to install the ALS Digest Archives from the "A:" drive to the "D:" drive type: A:INSTALL A: D: Currently, all three volumes (i.e. 1993 to 1995) of the ALS Digest Archive require slightly under 4,000,000 bytes of storage. As the archive continues to grow this number will increase. The installation program will create the directories \ALSIG\ARCHIVE on the designated drive. Programs and documentation will be stored in the \ALSIG directory while the ALS Digest text documents will be stored in \ALSIG\ARCHIVE. The ALS Digest documents will be installed on your system as read-only, if you should ever need to delete these documents type the following DOS commands: ATTRIB -R \ALS\ARCHIVE\ALSD*.TXT DEL \ALS\ARCHIVE\ALSD*.TXT The version of ALS Digest Archive which is on the installation disk(s) has been compressed into one or more PKZIP self-extracting archives. The names of these files are "ALSA199?.EXE", where "?" denotes the last digit of the year. You do not need a copy of PKUNZIP to install the ALS Digest Archive; however, if you have the PKZIP utility you can still process the self- extracting files as if they had a ".ZIP" suffix. To test the integrity of any ALS Digest Archive file just type the command: A:\ALSA1993.EXE -Test A:\ALSA1994.EXE -Test A:\ALSA1995.EXE -Test If you would like to install the ALS Digest Archive to a directory of you own choosing type: A:\ALSA1995.EXE d:\my\dir\ An ALS Digest search facility which uses standard DOS commands has been included with this package. After you have installed all of the ALS Digest Archives, run the demonstration program DEMOFIND.BAT or DEMOFIND.CMD if you are using OS/2. "Michael Ronayne" (2) ===== re: Is ALS invariably fatal? ========== Date : Thu, 12 Oct 1995 19:03:31 +0100 >From : per.dalen@helsingborg.se (Per Dalen) Subject: Re: Is ALS invariably fatal? (ALS 219) On Sun, 8 Oct 1995 Edward Anthony Oppenheimer, M.D. wrote: >I would be interested in comments from others who follow ALS and motor >neuron disease issues. It is frequently said that ALS is a fatal disease. >Is this true? There is an interesting case report of a woman who was diagnosed with ALS at a Swedish university department of neurology in 1984, when she was 29. Later the same year she had her dental amalgam fillings removed, and she was given supplements with selenium and vitamin E. Within the next few months her symptoms improved dramatically, and a thorough investigation at the neurology department five months after the amalgam removal disclosed no signs of neurological disease. The EMG had originally been distinctly abnormal and compatible with ALS, but was no longer so at this follow-up. When the report was being written in 1993, the patient was still in good health, 9 years after amalgam removal. I am new to this service, and the above case may of course have been cited in the Digest before. It was published in the International Journal of Risk & Safety in Medicine, 1994, 4:229-36. Authors: O Redhe and J Pleva. Regards, Per Dalen, M.D. per.dalen@helsingborg.se (3) ===== CYTOTHERAPEUTICS ========== Date : Thu, 12 Oct 1995 12:29:55 EDT >From : UKRY13A@prodigy.com (MR JOSEPH L SNYDER) Subject: CYTOTHERAPEUTICS Below is note from CytoTherapeutics first half report to shareholders "In March, Patrick Aebischer, M.D., Ph.D., a founding scientist of CytoTherapeutics, commenced a groundbreaking human clinical trial at the CHUV of a cell-containing implant to deliver a recombinant protein within the central nervous system. The implants utilized in the trial contain cells genetically engineered to release CNTF, a growth factor, for the treatment of ALS. Preliminary results from this trial are very encouraging: to date, our implants have functioned safely while releasing CNTF to the patients. This trial is an important demonstration of how we can combine our core encapsulated-cell technology with gene therapy to continuously deliver small amounts of potent factors within the blood-brain barrier. If this approach is successful, it will provide multiple new opportunities for expanding our product portfolio. Results from this trial are expected around year-end. . . We are working to make the second half of 1995 as scientifically productive as the first. The success, to date, of our chronic pain and ALS programs has led us to seek additional opportunities based on the delivery system used for these products. We believe that there are many commercial opportunities for expanding the use of this system to treat serious, chronic central nervous system disorders." For those of you with the financial resources, it is critical that you own shares of companies working on ALS products. These companies are : CytoTherapeutics, AMGEN,CEPHALON AND REGENERON. ALSO CAN SOMEONE INFORM ME OF PROGRESS OF NT-4 IN EUROPE AT STOCKHOLM'S KAROLINSKA INSTITUTE? ALSO APPARENTLY A CAMBRIDGE,MASS. CO. NAMED TRANSCEND THERAPEUTICS, INC. IS SCOPING OUT A NEW POWERFUL ANTI-OXIDENT ALS DRUG, ANYONE HAVE INFORMATION ON THIS ? JOE SNYDER LOUISVILLE KY,USA (4) ===== A couple of inquires ========== Date : Fri, 20 Oct 1995 23:54:33 -0400 >From : Edquist@aol.com Subject: A couple of inquires My wife's sister has had ALS for about a year now. Started with the left arm weakening where now it is totally lifeless. Recently noted a weakening in the right arm as well and an unsureness in walking resulting in a couple of falls. Don't know if this is a start of weakening of the leg, or legs or if it is due to not having the left arm available for balancing. The bulbar effect is now very pronounced and it seems that the last three months have seen a larger effect by month than previous periods. She has asked me to ask if there has been any studies involving amino acids? Her doctor also called and mentioned that there had been a small study in Whiet Plains NY involving a 3.4 diaminopyridine. Does this study have a significance. Thanks for providing the newsletter. I have been printing them out for my sister-in-law and she has really appreciated them. Torkel Edquist for Alice Goff (5) ===== Help with rare neurological disease ========== Newsgroups: sci.med: >From : thth <75022.554@CompuServe.COM> Subject : Help with rare neurological disease Date : 8 Oct 1995 07:23:49 GMT My mother was diagnosed at the Laheigh Clinic in Boston with a disease called Corticobasal Ganglionic Degenration (CBGD). It seems to be related to ALS. I'd like to dig up any information I could about this disease or about anyone studying this kind of thing. All information will be greatly appreciated. So would any direction to newsgroups or other internet (or non-net) sites where I could get current stuff on this. Thanks much. Yosi Greenfield (6) ===== Help on ALS please ========== Date : Sat, 21 Oct 1995 02:10:58 +1100 Originator: anchodd@cc.utas.edu.au >From : V116TBB9@ubvms.cc.buffalo.edu To : Multiple recipients of list Subject : Help on ALS please X-Comment : Australian National Clearing House on Drug Development Hi, everyone, I need your advice on ALS disease. A friend of mine in China got ALS disease which is incurable right now in China. We heard that maybe three kinds of drugs will be helpful. 1) L-leucine-L-isoleucine-L-valine. 2) Riluzole 3) Ciliary Would anyone please tell me: one, where I can get these drugs in the United States? two, if there is any other treatment that is better for this disease? Any information about ALS may be helpful for her life. Thank you very much for your attention and your help. Wendy (7) ===== sleepless ========== Date : Wed, 18 Oct 1995 13:40:37 -0600 >From : sth@piglet.lanl.gov (Steve Hildebrand) Subject: sleepless My ALS has now left me with the inability to turn over in bed at night. I'm unable to sleep in one position due to either a leg or arm goes to "sleep". Does anybody have a sugestion around this problem? Thanks, Steve (8) ===== info request ========== Date : Fri, 13 Oct 1995 12:53:56 -0600 (MDT) >From : "Ann S. Evans" Subject: info request A week or two ago there was a reference in the digest to an arginine/choline study. Can anyone provide the source reference? Many thanks. (9) ===== Television Show Needs Med. Stories ========== Newsgroups: sci.med: >From : foxa@sfu.ca (Jason Fox) Subject : Television Show Needs Med. Stories Date : 12 Oct 1995 03:30:38 GMT The Canadian Broadcasting Corporation needs medical stories for its award- winning show, 50/UP. 50/UP is a newsmagazine show for and about people 50 and over. Any medical issue or story of interest to our audience would be greatly appreciated. Thank you in advance for any suggestions or ideas. -Jason (10) ===== Unusual Symptoms ========== Date : Tue, 10 Oct 95 20:08:02 PDT >From : lgrigs@Onramp.NET Subject: Unusual Symptoms I have been reading the ALS Digest for several months now and have found it very helpful. For over a year I've experienced a variety of neuromuscular symptoms and seen two different neurologists, neither of whom have been able to make a diagnosis. The most troubling symptom is an internal shudder or vibration. This uncomfortable, but not painful shudder makes sleep very difficult. It has increased in duration and intensity over the last three months. Originally I noticed it only when I was very tired, or when I first laid down. As long as I moved frequently, it was not present. Now it is present almost all the time. It is accompanied with other sensations, including numb or tingling, pulsing sensations in the hands and sometimes in the feet. For several months I experienced frequent fasciulations at random all over the body. These have subsided as the shudder has increased. My questions is this. None of the literature describes an internal shudder, (There is no external tremor present.) as being a part of ALS symptoms. Is there any knowledge among the readers of the Digest of ALS patients experiencing similar symptoms. My doctors tend to rule out ALS because of the symptoms involving sensation. ------------------------------------- Name: L Grigsby E-mail: lgrigs@onramp.net Date: 07/28/95 Time: 18:48:14 ------------------------------------- (11) ===== WHAT IF ========== Date : Sun, 15 Oct 95 19:29:07 UT >From : "JOSEPH A. DiLANDRO" Subject: WHAT IF MAYBE I WATCH TOO MANY PBS SHOWS. WHEN A PERSON RECEIVES AN ORGAN DONATION I AM ALWAYS HAPPY FOR THEM THAT THEY HAVE RECEIVED THE ULTIMATE GIFT. WHEN A PERSON LOOSES A LIMB IN AN ACCIDENT AND IT IS RE-ATTACHED, I AM ALWAYS AMAZED THAT IT CAN BE DONE. IS IT TO MUCH TO THINK ABOUT "LIMB DONATIONS"? IF A PALS HAS LOST THE USE OF THEIR ARMS, BECAUSE OF MUSCLE AND NERVE LOSS, WHY CAN'T NEW ONES BE ATTACHED? IF A SEVERED LIMB CAN BE RE-ATTACHED WHY NOT A GOOD ONE IN PLACE OF A BAD ONE? AM I WAY "OFF BASE" WITH THIS IDEA? IS IT MORALLY OUT OF LINE". OR DO I JUST WATCH TOO MUCH TV AND "DREAM"? IS IT EVEN POSSIBLE? A PALS (12) ===== IBM Special Needs Solutions ========== Date : Fri, 13 Oct 95 12:12:25 EST >From : Michael_Ronayne@prenhall.com Subject: IBM Special Needs Solutions IBM Special Needs Solutions has a vision. We see IBM technology as a way to enhance the education, employability, and quality of life of people with disabilities. Under the Independence Series trademark, IBM has developed a number of assistive devices and software tools that make the computer more accessible and friendly to people with vision, hearing, speech, mobility, and attention/memory disabilities. These products include everything from interactive speech and cognitive therapy tools, to screen access software and keyboard access utilities, to screen enlargement programs. IBM's vision is one of all people -- teachers, parents, vocational rehabil- itation professionals, various associations, advocacy groups, governments, the medical community, and people with disabilities -- working together to use technology to open doors for achievement and independence. We do make a difference! IBM Special Needs Solutions URL: http://www.austin.ibm.com/pspinfo/snshome.html (13) ===== Chronic Illness URLs ========== Sender : Children with Special Health Care Needs : >From : Judith Winter Subject : URLs - Chronic Illness, Idea Nurse Comments: cc: inborn-errors@mailbase.ac.uk, : cc: genetic-disease@israel.nysernet.ORG this first URL is one of three home pages I have seen that are graphically and well-done, i.e. looks like a right-brained graphic designer thought, rather than a list-maker type. Even if you think you don't need the info, go for a look-see. Then, bookmark it, so if/when you need the info, you've got it. Chronic Illness Home Page http://www.calypte.com/ci_home.html links to: Autoimmune Disease Neurological Diseases and more ALSO, there's a research section where people post brief notices of requests for info etc. Idea Nurse http://www.callamer.com/itc/nurse (lotsa medical links) (including the Chronic Illness Home Page noted above) In connection, Judith Winter island@whidbey.net ///////////////////////////////////////////////// research, writing, teaching, & consulting about communication, planning, & decision-making related to business, society, health, & education ///////////////////////////////////////////////// (14) ===== Response to John Wallis ========== Date : 09 Oct 95 12:10:32 EDT >From : KENT LEE WOODMAN <71043.2035@compuserve.com> Subject: Response to John Wallis John - read yours of 25 Sep 95 with interest. I also have slow onset, but perhaps a different variety still than yours. My first symptoms were weak left foot and ankle while skiing in December 1988, followed by more and more "drop foot" and some loss of muscle mass in left calf. From then until my actual diagnosis in September 1994, I just got progressively weaker all over. This past year it is more noticeable. I limp, cannot lift anything heavier than about 20 pounds and always generally feel like I am walking in molasses carrying a 100 pound weight. I still walk, but need hand rail for steps. I still drive and work, but running is long gone and I need to roll over on my side to get up, because I cannot do a situp any longer. (the least important life style change for me - I always hated the damn things anyway) I also experience fasiculations, all over my body, faster than I can count or point out, but they are only a minor irritation that I hardly notice any longer.....so long as they do not start to give me facial twitches or some- thing. I find that I get cramps very easily. Any muscle I flex gets a Charlie Horse right away. Even when I sneeze, if I am sitting slumped down or with twisted torso, the stomach muscles cramp after they try to relax. I played with Quinine once, which is supposed to help, but could not tell any difference because I did not know if they were progressing or steady state. Again, not disabling, and I just try not to flex muscles. Your age is interesting. Certainly you have seen from the literature that you are on the very bottom of the anticipated age scale.....normally 50+. By fluke, I am exactly double your age, and it hit me at age 50 on the button. As to the EMG....they are NOT fun things. My first one only showed that 2 nerves in my left leg were not firing 100% and we went on a big X-Ray and MRI search for pinched nerves and even X-Ray'd for some hidden cancer cells. (only time I ever prayed for cancer!) When I went to San Francisco to UofC Neurology lab, they did a more complete EMG on a big, new machine, coupled with 7 huge blood tests, a breathing test and personal evaluations to make the diagnosis. Your neurologist should be able to tell you the locations of the best diagnosis facilities are near you. I do not know where you live, so cannot comment. I live in Anchorage, Alaska and they were all "south" of here 1,500 miles+. Obviously they do not know much about this illness, but I'd say your early onset age and my longevity would indicate that there are at least several variations of the main 2 types. By the way, as I recall, Steven Hawking was actually younger than you when he contracted it, and that was 30 years ago. Hmmmm. I have made lots of physical efforts to get ready for the next several years. Sold my airplane and hangar and upgraded computer gear so I can attempt to continue making a living as an engineering consultant and sometime World Wide Web page contractor as my mobility decreases. I am vice president of my local Hemlock Society and do NOT plan to enter the bed-with-tubes-and- ventilator stage.....I'm going to see what happens in the next life ahead of my friends, and spare everyone one lots of expense and agony! Good luck. Stay tuned. I receive a great deal of stoking of my own internal fire from reading the communications here in the ALS Interest Group page. Personally, the world owes me nothing.....I owe the world, and I am flat running out of time to repay it! -klw- (15) ===== BDNF ========== >From : nfranus@lsc.nwu.edu (Noel Franus) Subject: BDNF Date : Wed, 11 Oct 1995 11:15:10 -0500 I'm doing some research and was wondering what information any of you may have about BDNF, in both layman's terms and if anyone has anything more technical. I've called Amgen and they have no literature on BDNF as of 10/11/95. My questions: What exactly is BDNF? How many clinical trials have been conducted and what were the results (Improved quality of life? Longer survival?)? Facts would be great and if you have any personal experience with BDNF, feel free to editorilaize. Your input is appreciated. Thanks much. Noel Franus Learning Sciences Corporation nfranus@lsc.nwu.edu (16) ===== Toxic Oil Syndrome ========== Date : Wed, 11 Oct 95 18:01:26 BST >From : a-furley@nimr.mrc.ac.uk (Andy Furley) Subject: Toxic Oil Syndrome For legal compensation reasons, Toxic Oil Syndrome, which became apparent in the early '80s in Spain, has hit the headlines in Europe again. I know very little about it, but the brief descriptions I have seen suggests that it may have some symptoms in common with ALS. Briefly, toxic oil syndrome (TOS), which affected over 20,000 persons in Spain in 1981, has been linked to the consumption of aniline-denatured rapeseed oil (although the precise etiologic agent is still unknown). Severe neuromuscular manifestations (myalgia severe enough to restrict movement, motor deficits, atrophy of major muscle groups, and contractures of the jaw and extremities) seems to occur late in the course of the illness in ~25% of the patients. It seems that at least some of these symptoms could be related to ALS. A brief scan of the literature reveals no connection having been made before, but I wonder if the ALS MD readership has considered a possible connection? All the best, Andy Andrew J.W. Furley, Ph.D. Developmental Neurobiology National Institute for Medical Research The Ridgeway, Mill Hill LONDON, UK-NW7 1AA Tel. +44 181 959 3666 x2252 Fax. +44 181 913 8536 or 906 4477 === end of als 220 ===