=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#76, 27 December 1993) == == == == ----- 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. Currently there are == == 180+ subscribers. == == == == To subscribe, to unsubscribe, to contribute notes, == == etc. to ALS Digest, please send e-mail to: == == bro@huey.met.fsu.edu (Bob Broedel) == == == == All interested people may "broadcast" messages to == == ALS Digest (not a peer reviewed journal, and not edited == == by an MD) subscribers by sending to: == == als@huey.met.fsu.edu == == == == Bob Broedel; P.O. Box 20049; Tallahassee, FL 32316 USA == =============================================================== == Back issues are available via e-mail from: == == LISTSERV@mailer.fsu.edu == == send an e-mail message that says INDEX ALS == == Also available via anonymous FTP at mailer.fsu.edu == == directory ftp/pub/als == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == =============================================================== (1) ===== regarding L-threonine and ALS ========== >Date : 23 Aug 93 13:34:32 EDT >>From : RON LEEB <72613.2113@CompuServe.COM> >To : ALS DIGEST >Subject: Amino Acid Studies > >I just finished reading an article titled: Amino-acid studies raise >hopes: nutrients may reduce ALS problems (Nutrition Health Review, >Spring 1990 n54 p2(4)), that I thought would be of interest to those >of you not familiar with L-threonine. I've had ALS going on 14 years >now and have been taking L-threonine since `86. Every-other-day I >take three 500 millograms of it, and I'm unable to function without it. >Read the article, I believe you'll find it of interest.--Ronn > Ron ... here is some related information from MEDLINE. rgds,bro MEDLINE Easy Search Facility============================ ========================================================= 1. L-threonine as a symptomatic treatment for amyotrophic lateral sclerosis (ALS). 2. A double-blind placebo-controlled trial of L-threonine in amyotrophic lateral sclerosis. DOCUMENT 1 OF 2 - SET SEARCH TERMS L-THREONIN, AMYOTROPHI ========================================================= Document No : 91278764 Title : L-threonine as a symptomatic treatment for amyotrophic : lateral sclerosis (ALS). Author : Roufs JB Source : Medical Hypotheses 1991 Jan;34(1):20-3 MESH Headings: /DT!;Amyotrophic Lateral Sclerosis/DT!;/PP;Amyotrophic : Lateral Sclerosis/PP;Amyotrophic Lateral Sclerosis!; : Lateral;Sclerosis;/ME;Central Nervous System/ME;Glycine : /ME;Human;Models, Biological;Biological;/TU!;Threonine : /TU!;Threonine! : Abstract : ALS is a fatal, neurological disease of unknown origin : with no present cure. A recent pilot study has shown : that L-threonine, an essential amino acid, may be : effective in the symptomatic treatment of ALS. Relevant : information discussing the potential role of L-threonine : in the treatment of ALS is presented. DOCUMENT 2 OF 2 - SET SEARCH TERMS L-THREONIN, AMYOTROPHI ========================================================= Document No : 92202959 Title : A double-blind placebo-controlled trial of L-threonine : in amyotrophic lateral sclerosis. Author : Blin O;Pouget J;Aubrespy G;Guelton C;Crevat A;Serratrice G Source : Journal of Neurology 1992 Feb;239(2):79-81 MESH Headings: Aged;/DT!;Amyotrophic Lateral Sclerosis/DT!;Amyotrophic : Lateral Sclerosis!;Lateral;Sclerosis;Double-Blind : Method;Method;Female;Human;Male;Middle Age;Age;/DE;Receptor, : N-Methyl-D-Aspartate/DE;Receptors, Synaptic/DE;/PH;Receptors, : Synaptic/PH;Severity of Illness Index;Illness;Index; : /PD;Threonine/PD;/TU!;Threonine/TU!;Threonine! : Abstract : Fifteen patients with the unequivocal diagnosis of : amyotrophic lateral sclerosis (ALS) completed a 1-year : randomized double-blind placebo-controlled trial of : L-threonine (2 g daily). During the study, patients in : the placebo group showed a decline in functional status : consistent with the natural history of ALS, which was : not statistically different from outcome in the patients : in the L-threonine group. (2) ===== REPLAY - re: Kennedy's disease ========== Some of the best material to be seen on this e-mail network was in the form of messages not included in the ALS Digest. I will "replay" some of the best messages just in case they were missed by late-commers to the net. bro QUESTION: ============================= >From : foster FRIENDS.IN.TIME hall Subject: Kennedy's disease To : als@huey.met.fsu.edu Date : Sun, 22 Aug 1993 12:40:16 -0600 (MDT) Are there any updates on diagnosis and treatment of Kennedy's Disease? Thanks in advance, Foster ANSWER: =============================== Date : Mon, 23 Aug 93 16:44:01 -0400 Sender : fischbeck@a1.mscf.upenn.edu >From : "Dr. Kenneth Fischbeck" To : als@huey.met.fsu.edu Subject: Kennedy's disease Kennedy's disease (X-linked spinal and bulbar muscular atrophy) is a form of motor neuron disease which can resemble ALS, but differs in that it is more slowly progressive, only affects males, and causes only "lower motor neuron" weakness, atrophy, and fasciculations, without spasticity and hyperreflexia. The weakness starts in adulthood, is often associated with muscle cramps, and is symmetrical and proximal, affecting primarily the hip & shoulder muscles. Kennedy's disease is caused by a specific mutation (an expanded trinucleotide repeat) in the androgen receptor gene. We have now seen this mutation in over 100 patients, and another 100 or so have been studied elsewhere. Our own research is aimed at developing a model system for Kennedy's disease by introducing the mutated gene into cultured neurons and transgenic mice. Our hope is that such a model system could be used to develop a rational and effective treatment. Meanwhile, an experimental protocol using the anti-androgen luprolide (Lupron) has been set up at Ohio State University by Dr. Jerry Mendell. There is good reason to believe that this agent, which is now being used in the treatment of prostate cancer, may block the toxic effects of the mutated androgen receptor in Kennedy's disease. A simple and accurate blood test for Kennedy's disease is available through Dr. Jeff Kant in the Molecular Diagnostic Laboratory here at the University of Pennsylvania (215-662-6550). Those interested in the experimental treatment protocol should contact Patrick Vaglienti at Ohio State University (614-292-1234). K. Fischbeck, M.D. (fischbeck@a1.mscf.upenn.edu) (3) ===== assistive feeder information (from the MD list) ========== Date : Wed, 22 Dec 1993 17:47:53 -0700 >From : "Ray Harwood To : MD-LIST@DATA.BASIX.COM (Muscular Dystrophy list) Subject: Assistive Feeder Info Mr. Anne Zielstra has provided a file with the results of his search of the ABLEDATA for devices which assist in feeding one's self. Quite a variety of devices are listed, and if you are interested, the information is very easy to obtain. Just follow these directions: Send an EMail to the following address (NOT to MD-List!): MD-Files@Data.Basix.COM with the following message BODY: SEND TECHNO.FEEDERS Again, please use the correct mailing address so as to not send your request to the entire list. If you have any problems, please EMail me directly at MD-List-Owner@Data.Basix.COM. Season's Greetings! Ray ----- Ray Harwood | Data Basix | Adjunct Faculty, East Campus, Voice: (602)721-1988 | PO Box 18324 | Pima Community College FAX: (602)721-7240 | Tucson, AZ 85731 | Instructor in Ada and Pascal rharwood@Data.Basix.COM | Info@Data.Basix.COM | rharwood@east.pima.edu (4) ===== re: Kugelberg Welander syndrome (from the MS list) ========== >Date : Mon, 27 Dec 1993 00:20:24 GMT >Sender : Multiple Sclerosis Discussion/Support > : >From : James Kresge >Subject: Kugelberg Welander syndrome. > >RE: KUGELBERG WELANDER SYNDROME > >Does anybody out there know what this is? I was diagnosed with >this when I was 18 years old. I am 47 now and have been wondering >ever since if the symptoms that I have are KW or thes result of an >accident that I was in when I was 17. > >Symptoms=atrophy of the deltoids shoulder muscles and general >weakening of the arms. Fasciculations (quivering) of the musles >periodically. > >This syndrome has been classified as an ALS-type disease. This >is why I am posting this article here. > >If anybody has this, please respond! --Regards, >____________________________________________________________________ > >Jim Kresge kresge@netcom.com "One Day at a Time" >__________________________________________________________________________ > Jim ... I don't have the disease but you may be interested in the following from THE SELF-HELP SOURCEBOOK: Finding and Forming Mutual Aid Self-Help Groups by Ed Madara <70275.1003@compuserve.com>. "FAMILIES OF SPINAL MUSCULAR ATROPHY INTERNATIONAL (P.O. Box 1465; Highland Park, IL 60035, TEL 708-432-5551). Support & networking for families affected by spinal muscular atrophy including Werdnig- Hoffman, Oppenheim's & Kugelberg-Welander Disease & Aran-Duchenne Type. Provides educational resources, group development guidelines, newsletter, pen pals, phone support & videotapes." They will be able to put you in touch with others with the disease. rgds,bro P.S. the Self-Help SourceBook is available from: American Self-Help Clearinghouse; St. Clares-Riverside Medical Center; 25 Pocono Road; Denville, NJ 07834. $10.00 postpaid. (5) ===== re: Alzheimers disease (from a nursing list) ========== Date : Thu, 23 Dec 1993 09:12:23 EST Sender : NURSENET - A Global Forum for Nursing Issues : >From : Theo Leverenz Subject: Alzheimers' discussion list I am looking for a list or lists with a focus on alzheimers disease, in particular from caregivers' perspectives. NURSENET was one suggestion I received, but given the vast array of topics likely to be covered on such a list, I wanted to ask about alzheimers discussions before subscribing on the assumption that my particular interest would be too narrow. Any other suggestions? ....Theo Leverenz -------------------------========================------------------------ Theo. R. Leverenz, Ph.D. THE Georgetown College 502-863-6053 (Voice) Research & Planning 400 E. College St. 502-868-8891 (Fax) Office of the President Georgetown, KY 40324 -------------------------========================------------------------ == end of als 76 ==