=============================================================== == == == ----------- ALS INTEREST GROUP ----------- == == ALS Digest (#84, 18 February 1994) == == == == ------ 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 == == 200+ 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 subscribers by sending to: == == als@huey.met.fsu.edu == == == == The ALS Digest is not a peer reviewed journal and it is == == not edited by an MD. It comes out (usually) weekly. == == == == 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 /pub/als == == Hardcopy versions (with extensive indexing) available == == from Grant Nicholas (gnicholas@pcgate.lanl.gov) == == A Global Index of issues 1-75 (created by G. Nicholas) == == is available via FTP. The 150K file is named als.index == =============================================================== CONTENTS OF THIS ISSUE: 1 .. clinical trial in Boston area 2 .. ALS questions 3 .. re: Recordings for the Blind 4 .. some more recent references to ALS 5 .. ALS & Pain 6 .. request for assistence / cerebral palsy 7 .. new list on molecular diagnostics (1) ===== clinical trial in Boston area ========== Mailer: America Online Mailer Sender: "billb67399" Date : Tue, 15 Feb 94 22:23:37 EST I have a message for ALS patients in the Boston area concerning a clinical trial that is gearing up. Brigham & Women's Hospital in Boston is looking for ALS patients to take part in its 9-month clinical trial of Brain Derived Neurotrophic Factor (BDNF). The clinic will begin its testing process in March. Anyone interested should call Liz at Brigham & Women's, 617-732-5406. The company sponsoring the study of BDNF is Regeneron, also of CNTF fame. An article publshed in Nature magazine (December 1992) showed that BDNF promoted motorneuron generation in animal studies. D. Bulkeley ======= == Editor's Note: The ALS Association maintains a very complete list == of clinical trial sites in the US and Canada (for CNTF, BDNF, == Riluzole, Myotrophin, etc.). == Interested people should write for the latest edition, at: == ALS Association; 21021 Ventura Blvd., #321; Woodland Hills, CA 91364; == TEL 818-340-7500, FAX 818-340-2060. ======= (2) ===== ALS questions ========== Topic 839 ALS questions with 1 response >From: uu6@bard.uk.cray.com bionet.neuroscience 11:19 am Feb 11, 1994 I am an ALS patient and I am trying to gain a clearer understanding of this disease. If I may, I have listed some questions which I would like some help with. I would appreciate any help anyone can offer. I apologise if some of these sound dumb but my background is electronics and computing not neuroscience, but I am learning fast. 1. ALS appears to damage the large neurones in the anterior grey matter and interneurones both of which are believed to be glycinergic. ( Hayashi et al 1980 ) It was found that the glycinergic receptors demonstrated reduced bindings. The cholinergic, dopaminergic, GABAergic and beta-adrenergic receptor bindings were normal. Is this still the current school of thought and is it true that ALS is limited in this way? 2. In the familial case of ALS it was discovered that the SOD gene was mutated. It was demonstrated that the level of SOD was reduced in these cases. However it was discovered that this reduced level exists in people prior to the onset of ALS symptoms. This raises some questions. a) Is it the case that the mutation does not cause ALS but simply makes people more susceptible to the disease. If this is the case what might it be that triggers this transition? b) Do we know if there is anyone who has the mutation and the reduced SOD level, but has never contracted ALS? Also is it possible to correlate the onset with the proportion of reduced SOD levels in individuals? Is there a critical level? c) Could it be that SOD gene mutation is purely coincidental and is not related to the disease onset? 3. There is much talk in the medical community at present about neurotrophic factors. It has been said that ALS is likely to be one of the first disorders to benefit from nerve growth factors because crossing the blood brain barrier is not necessary. I am not clear on this. If the neurones are dead how can they be revived? Indeed are they dead or simply comatosed in some way? Also what decides whether they live or die? What is the criteria for deciding against growth or death? 4. Finally people talk of ALS as if it were one disease with a variety of symptoms. Is it not possible that we are looking at range of different diseases but with similar symptoms? Do we need to improve diagnostic techniques if we are going to make treatment effective for individuals? Hopefully I have not offended anyone with these fairly basic questions but I am trying to learn as much as possible about this disorder. This is prior to submitting myself to various drug trials and potential treatments, but I would like to understand a little more. Having said that time is of the essence and maybe it is too late for me. Perhaps I am an optimist but I do feel we are the verge of some breakthroughs at last, which could help others. Regards Tony Internet mail address-Tony.McDonough@cray.com Topic 839 ALS questions Response 1 of 1 >From: santhosc@essex.hsc.colorado.edu bionet.neuroscience 2:57 am Feb 14, 1994 There are two fairly recent reviews on ALS. Swash et al. What do we really know about ALS? J Neurol Sci 1992;113:4-16 Williams et al. Motor neuron disease. Mayo Clin Proc 1991;66:54-82 (3) ===== re: Recordings for the Blind ========== Date : 16 Feb 94 19:17:36 EST >From: Barry Goldberg <71154.330@CompuServe.COM> I noticed the message from Ray Harwood in ALS #83 regarding Recordings for the Blind and thought I would share with you the message I added to the MDA Forum where this was first published. It is a program which certainly is easy to participate in...and the cost is fantastic! Here's the message I sent: -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- -- I have recently had the opportunity to sign up for the Library of Congress program for individuals with physical disabilities which here in Texas is run through the Texas State Library. The bottom line is that through this program, equipment, records, cassettes, etc...including some magazines...are made available AT NO COST! Forms are available at most public libraries -- one for the Library of Congress and one for the state agency which provides the service in the local area. These are very simple and basically ask only name and address information. There is also a section for an authorized individual such as a doctor to complete and sign. These are then mailed to the addresses provided and the rest is amazing. I received a call from the Texas State Library representative asking which equipment would be best for my condition, what type of books I liked, etc. Within a week I received the special cassette player, the following week I received two books on tape, and began receiving catalog after catalog of materials available on tape and the like. Even the postage is paid both ways. I also received the RFB folder which includes a form on which I can request books I personally would like recorded! This is a terrific service and is available in every state although the agency may change. Check your public library for further information. This sure beats paying for books on tape at the store or through the rental service. Oh, yes -- toll free numbers are provided for placing orders or requesting additional adaptive equipment including pillow speakers, extension controls and the like -- again at no cost. Check it out! I'm personally reading Robin Cook's "Blindsight" at the moment. Not bad at all! Barry H. Goldberg [71154,330@compuserve.com] --- ==== MDA -- Working to find the cure for neuromuscular disease ==== (4) ===== some more recent references to ALS ========== =============================================== Title : Elastin cross-linking in the skin from patients : with amyotrophic lateral sclerosis Author : Ono S.; Yamauchi M.; Source : 1994 57/1 (94-96) JNNPA Journal of Neurology : Neurosurgery and Psychiatry Abstract : Two cross-links unique to elastin, desmosine and : isodesmosine were measured and compared in skin : tissue (left upper arm) from 10 patients with : amyotrophic lateral sclerosis (ALS) and from seven : age-matched controls. The contents of desmosine and : isodesmosine were significantly decreased (p < 0.01 : and p < 0.01, respectively) in patients with ALS : compared with those of controls, and were negatively : and significantly associated with duration of illness : in ALS patients (r = 0.77, p < 0.01 and r = -0.65, : p < 0.05, respectively). The decline in skin desmosine : and isodesmosine is more rapid in ALS than in normal : ageing. Thus cross-linking of skin elastin is affected : in ALS. =============================================== Title : Trial of oral physostigmine in amyotrophic lateral : sclerosis Author : Norris F.H.; Tan Y.; Fallat R.J.; Elias L.; Source : 1993 54/6 (680-682) CLPTA Clinical Pharmacology and : Therapeutics Abstract : We evaluated a double-blind, placebo-controlled, and : double-crossover trial of oral physostigmine salicylate : for a 9-month period in 13 of 25 patients with sporadic : amyotrophic lateral sclerosis (ALS). A large dropout : rate of 48% was secondary to eight deaths and four : exclusions attributed to the incapability to swallow : the tablets (physostigmine) and capsules (lecithin) or : to attend the clinic. Parameters used for assessment : of the drug efficacy included body weight, ALS score, : Jamar grip strength, forced vital capacity, and maximum : voluntary ventilation. It revealed slight benefit in : reduced loss of grip strength compared with the pretrial : and placebo periods. However, the rates of decline for : body weight, ALS score, forced vital capacity, maximum : voluntary ventilation, and megascore did not differ : significantly between the pretrial, placebo, and : physostigmine periods. We therefore concluded that : overall no significant alteration in the clinical : course was gained by oral physostigmine therapy in the : 13 patients with ALS who were included in this study. =============================================== Title : Changes in CSF amino acid concentrations during the : evolution of amyotrophic lateral sclerosis [2] Author : Blin O.; Samuel D.; Nieoullon A.; Serratice G.; Source : 1994 57/1 (119-120) JNNPA Journal of Neurology : Neurosurgery and Psychiatry =============================================== (5) ===== re: ALS & Pain ========== Date : 15 Feb 94 17:00:11 EST >From : Barry Goldberg <71154.330@CompuServe.COM> Subject: ALS and pain In regards to the questions raised by everyone regarding pain accompanying ALS, after four years with this disease I've come to believe that the literature is wrong. In my case, the two areas affected most initially were my left hand/arm and my right hip. My hip and left shoulder were always in pain and early on I even tried ultrasound treatments and massage through physical therapy. Everything was only temporary in terms of relief. As the disease progressed, I also began noticing pain in the neck and frequent headaches. What I finally learned after speaking with doctor after doctor and therapist after therapist is that the concept that ALS is painless is simply not true. As the muscles atrophy, the sheer weight of the extremity (arm, leg, head) causes pain -- shoulder aches from having the arm hang down, hip and leg pain from the leg losing its muscle tone, neck, shoulder and headache pain from the weight of the head. This doesn't take into account pain associated with severe cramping which has affected me throughout the course of my illness. The resolutions I've reached personally are as follows: for the shoulder, range of motion exercise is critical and the same goes for the hip. Also, I have added arm troughs to my wheelchair to keep as much weight off the shoulders. Using the wheelchair with a good Rojo cushion has relieved the majority of the hip pain and a headrest on my wheelchair and recliner helps the neck pain. Add some Advil and for the most part the pain is under control. If you aren't in a wheelchair, a couple of options include the ever-lovely and oh-so-uncomfortable neck brace for neck pain, and I even used an arm sling to keep weight off the left shoulder. My cramping has been under control using a combination of baclofen, quinine and a miracle for me called Slow-K, a prescription strength of potassium. That's what's worked for me but I'd still check with your doctor or physical therapist about how your particular problem can be helped. As for the literature, I don't know what can be done. Perhaps copies of these messages could be sent to the ALS Association and the Muscular Dystrophy Association asking them to have their doctors put this "side-effect" in the brochures. Most of my physicians have been pretty honest but that doesn't help those who only have access to the material that's out there. Good luck. I'm glad to know I wasn't the only one having difficulty with pain! --- ==== MDA -- Working to find the cure for neuromuscular disease ==== (6) ===== request for assistance / cerebral palsy ========== Topic 833 Subj: CEREBRAL PALSY. We are lookin bionet.neuroscience 10:00 pm Feb 10, 1994 From: kt@valset.spb.su Dear colleagues! I am posting on behalf of Institute of Experimental Medicine, St-Petersburg, Russia We are looking the addresses of rehabilitation science centers and laboratories which specialized in Cerebral Palsy. We are interested in getting into science contacts. Elena Oryol (7) ===== new list on molecular diagnostics ========== Date : Sun, 13 Feb 1994 12:33:02 -0600 Origin : hmatrix-l@ukanaix.cc.ukans.edu >From : "Ken Boschert" Subject: NEW LIST: MxDIAG-L (Molecular Diagnostics) fyi ken ------- Forwarded Message Follows ------- >From: Tony Killeen >Newsgroups: bionet.announce >Subject: New Listserv for Molecular Diagnostics >Date: 11 Feb 1994 22:21:10 -0800 >Organization: University of Michigan, Ann Arbor You or your colleagues may be interested in a new LISTSERV dedicated to molecular diagnostic applications in pathology. Here is the mission statement of this service: * This list will provide a forum to exchange information for those * physicians and scientists interested in the application of modern * molecular techniques to the field of pathology, especially in the * area of diagnostics. The list will not be moderated in order to * encourage participation. All information relevant to molecular * pathology/diagnostics including technical discussions, regulatory * information, meeting announcements, managerial issues, etc. are * appropriate for this list. To subscribe to the list, send this message (without a subject line) SUBSCRIBE MxDIAG-L to: LISTSERV@ALBNYDH2.bitnet To send a message to the list, use this address: MxDIAG-L@ALBNYDH2.bitnet The list works as a mail distributor which will automatically forward a message to all the subscribers simultaneously. In addition, messages will be stored in a monthly log for subsequent retrieval. If your work involves molecular techniques as applied to human diseases, especially to diagnostics, this list should provide a useful place for discussion of topics of interest to you. ============================================================================= ^__^ ( / \ ) Ken Boschert, DVM * Washington University * Div. of Comparative Med. 660 South Euclid Avenue, Box 8061 * St. Louis, MO 63110 \ / Voice: 314-362-3700 * Fax: 314-362-6480 * LABBS: 901-758-0401 =\/= Internet: ken@wudcm.wustl.edu / Compuserve: 73177,3346 / AOL: KENB52 ============================================================================= == end of als 84 ==