Date: Thu, 3 Nov 94 09:29:20 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#123, 06 September 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 == == 320+ 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 .. Editorial -- a request re: als@huey 2 .. familial ALS 3 .. re: neurontin 4 .. re: live cell therapy 5 .. Prodigy Medical Support Bulletin Board Survey on Neurontin 6 .. re: pergonal treatment 7 .. Request for information about Neurontin 8 .. Technology 9 .. Article in New York Newsday about ALS 10 . get a copy of the Newsday article on Neurontin 11 . There must be more Bulbar people (1) ===== Editorial -- a request re: als@huey ========== Please understand that *nobody* has broken any rules ... because we really haven't had any rules, nor have we needed them. All participants of the ALS Interest Group are terrific folk, who need no rules. But now I do have an important request of all members. Please do not send messages to the address als@huey.met.fsu.edu from ====== ==================== now on. Messages to that address are automatically broadcasted to all subscribers. At one time we mentioned this feature at the head of each issue of the ALS Digest, and we even encouraged all interested folk to use it freely as desired. At that time we were a fairly small group, but now that we have grown in number and in regions of outreach, the feature is causing problems. I get approximately two complaints per week about the "sporatic" messages. Some complaints are from CompuServe users who have to pay for recieving messages, some are from ALS researchers who do not have time to search through messages but who are willing to subscribe (and at times, contribute) to the weekly Digest, some complaints are from international subscribers who are paying for their on-line connections, etc. At this point in time some messages are being relayed to non-standard international systems that are not connected to the Internet (not even by an internet-gateway ... the exchange is being done manually by volunteers, many of whom do not speak English as their native tongue). In fact people in some parts of the world are recieving the Digest by way of an Internet- to-FAX connection, but unless the messages have the ALS Digest header, it is not always clear as to who should get the FAX message. And in some countries the messages are being automatically forwarded to internal systems in a way that is confusing as to who they are being directed to. In other words, the ALS Digest is now reaching all around the world, but not always via a simple and direct e-mail route. As always, I thank all of you for participating in this international ALS-oriented e-mail network. With kind regards & with love, Bob Broedel (2) ===== familial ALS ========== Date : Mon, 05 Sep 94 15:12:01 -0400 >From : "Dr. Kenneth Fischbeck" Subject: familial ALS To : "Tracy J.Brown o/o" Subject: RE: Request for further info re. forms of familial ALS... Under separate cover, I have sent you information regarding familial ALS from OMIM (On-line Mendelian Inheritance in Man), a reference source for human hereditary diseases available through gdb.org. About 10% of ALS is familial, and 15-20% of the familial cases have mutations in the superoxide dismutase gene on chromosome 21; this is referred to as "ALS1". This form of hereditary ALS has the same age of onset and rate of progression as sporadic ALS, i.e., relatively late onset and relatively rapid progression (although both onset and progression vary considerably from patient to patient). "ALS2" refers to a rare, autosomal recessive form of ALS (ALS1 is autosomal dominant) that has been best described in the Tunisian population. The onset is in childhood or adolescence (age 3-23), and the rate of progression is much slower than in ALS1 and sporadic ALS. It has been mapped to chromosome 2. I do not see an official listing for "ALS3". Perhaps this refers to other familial ALS patients who do not have gene defects on either chromosome 21 or chromosome 2. This group makes up the majority of familial ALS, but the gene or genes involved remain to be identified. I hope this helps. If you want additional information, you might contact Dr. Teepu Siddique in the Neurology Dept at Northwestern Univ in Chicago, who has been responsible for much of the recent research in this area. K. Fischbeck, M.D. (3) ===== re: neurontin ========== Date : Sun, 4 Sep 1994 23:54:15 -0500 >From : jdevereux@gcg.com Subject: re: neurontin hi everyone, I have recently started taking neurontin and I am amazed at the improvement in my speech and swallowing. Does anyone have any ideas about an easier way to take it - other than a 300 mg capsule? Judi (4) ===== re: live cell therapy ========== Date : 05 Sep 94 00:55:52 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: live cell therapy re:"live cell therapy" hearsay The wife of a former coworker of my dad's has ALS and got this treatment in Tijuana. "She hadn't spoken in six months," we were told, but crossing the border on their return she began to speak with perfect clarity, and had other very positive effects. The benefits were gone within 24 hours. Two subsequent treatments had no effects. Wayne Phillips 70303.173@compuserve.com (5) ===== Prodigy Medical Support Bulletin Board Survey on Neurontin ========== Date : Thu, 1 Sep 94 08:38:20 PDT >From : Kathy=Goeddel%CGG%InfoSys@banyan.BV.TEK.COM Subject: Prodigy Medical Support Bulliten Board Survey on Neurontin One of the very active Prodigy med. support bulletin board participants, Barb Drummond, coordinated a survey of ALS patients taking Neurontin. The survey is based on SUBJECTIVE evaluations and reflects how those people felt after just 4 weeks on Neurontin. With those caveats, here is her note: Board: MEDICAL SUPPORT BB Topic: NEUROLOGICAL Subject: A.L.S. Neurontin Evaluations - Week 4 In May I suggested that perhaps we should use a brief questionnaire to track ( for 6 mos) those prodders who are taking Neurontin. Questionnaires were sent to anyone who requested them. I received 25 completed evaluations and I have compiled the following results: Of the 25 who responded, 4 stopped taking Neurontin after less than 1 month due to side effects. 2 male, 2 female. 2 stopped due to a loss of strength, 2 stopped due to drowsiness. This left 21 prodders; 16 male, 5 female. Dates of diagnosis are: '88 (3) '89 (1) '90 (4) '91 (1) '92 (3) '93 (5) '94 (4). 17 are limb onset, 4 are bulbar onset. Dose levels: 300 mg (3) 600 mg (2) 900 mg (10) 1200 mg (1) 1500 mg (1) 1800 mg (4). Statistics for the 21 are as follows: B=better S=same W=worse Respiration: B 33.33% S 61.90% W 4.76% Speech: B 33.33% S 61.90% W 4.76% Swallowing: B 28.57% S 71.42% W 0% Dexterity: B 23.80% S 57.14% W 19.04% Mobility: B 28.57% S 57.14% W 14.28% Muscle Function: B 28.57% S 52.38% W 19.04% 6 prodders are taking Neurontin and CNTF. Their stats are: Resp: B 33.33% S 66.66% W 0% Speech: B 33.33% S 66.66% W 0% Swallowing: B 16.66% S 83.33% W 0% Dexterity: B 16.66% S 66.66% W 16.66% Mobility: B 50% S 50% W 0% Muscle Function B 50% S 50% W 0% 5 prodders are taking Neurontin and Eldepryl. Their stats: Resp: B 20% S 80% W 0% Speech: B 20% S 80% W 0% Swallowing: B 20% S 80% W 0% Dexterity: B 40% S 60% W 0% Mobility: B 60% S 40% W 0% Muscle Function: B 40% S 60% W 0% Due to the variety of drugs being taken, I only figured the stats for CNTF and Eldepryl. Comments were too numerous to include here. Many of them have been posted in weekend updates. Side Effects: No side effects: (11) Dizzy or light-headed (4) Drowsy (8) "up" feeling (1) less muscle control (1) increased salivation (1) dry mouth (1). Note: some had more than one side effects. Well, that's it. I didn't figure comparative stats using dose levels. At this point we're too spread out. Please remember that these stats represent only the week 4 evaluations and that they are subjective. As soon as all of the 8 wk evaluations are back, I'll post those results. (6) ===== re: pergonal treatment ========== Date : 05 Sep 94 00:56:20 EDT >From : wayne phillips <70303.173@compuserve.com> Subject: pergonal treatment re:Pergonal treatment A few issues back I asked whether anyone had knowledge of results of Dr. Lance Meagher's proposed Pergonal treatment. FYI, I recieved no replies. Wayne Phillips 70303.173@compuserve.com (7) ===== Request for information about Neurontin ========== >From : Hchapnick@aol.com X-Mailer: America Online Mailer Date : Thu, 01 Sep 94 15:41:59 EDT Subject : Request for Information about Neurontin Dear Folks: My name is Howard Chapnick. I am a subscriber to America On-Line and one who has been diagnosed with ALS "Lou Gehrig's Disease." There was a big article in Newsday, the newspaper, telling about the use of "Neurontin", an epilepsy drug, by ALS sufferers and that there was anecdotal reference to the beneficial aspects of such use. I have been told by the California ALS Headquartters that there is a Bulletin Board or Chat Room which houses all this information and I am very anxious to get into that file. I understand that the E-mail address I am sending this to is a Prodigy address. I have been told that that file can be reached through the Internet Gateway and hopefully this message will reach you. Would you be good enough to let me know if this message has reached the right place and how I can latch on to all information related to the use of neurontin. Your help is most appreciated. My e-mail address on the America On-Line network is "HChapnick". Thank you very much. Sincerely, Howard Chapnick ==== = Most of the neurontin discussion is happening on the Prodigy system. = The Internet-GateWay will let you send messages to Prodigy subscribers = but I doubt that it will let you access files. Some of their discussion = has been forwarded to this Internet-oriented list by volunteers, as you = will see in other notes. But to be a full participant in the Prodigy = system one will need to subscribe to their service. For info about how = to do that, call their customer service at 800-PRODIGY. = In the mean time I have added you to the distribution list for the = ALS Interest Group. Welcome to ALS-ON-LINE! rgds,bro ==== (8) ===== Technology ========== Date : Thu, 1 Sep 94 13:02 EST >From : Mark Reeverts <0006890746@mcimail.com> Subject: Technology Another round on the tech question. Anyone with info. on communication technology (voice synthesis), please provide. Also, D.S. is experiencing a lot of pain in his collarbone and neck area, from the lack of muscle control?. Any info. or thoughts to relieve the pain are helpful. Thank you for the info I've recieved on my friends' behalf. They will be online in the next week or two. Mark ==== = A very good source for this type of information is the Trace Research = and Development Center. The book I have from them is called the TRACE = RESOURCE BOOK: Assistive Technologies for Communication, Control, and = Computer Access (1993-94, $40.00). It is a very complete source, that = lists vendors, gives their addresses & phone numbers, etc. = = Also, the Trace Center's free-of-charge general catalog of offerings = should be considered "required reading" for all who are interested in = this topic. They offer software, conference reports, design guidelines, = project reports, etc. = = Trace Research and Development Center = University of Wisconsin-Madison = S-151 Waisman Center = 1500 Highland Avenue = Madison WI 53705-2280 = TEL 608-263-2309 = E-mail: info@trace.waisman.wisc.edu = rgds,bro ==== (9) ===== Article in New York Newsday about ALS ========== Date : Thu, 01 Sep 94 15:08:24 EST >From : "Mike Doliton" Subject: Article in New York Newsday about ALS To All: We're getting coverage for ALS. Tuesday August 30, 1994 an article was published in Newsday, a New York Paper. The subject was "The ALS Drug Frenzy". "Thousands of people with Lou Gehrig's disease are demanding a new medication, without waiting for scientific evidence that it works". Several people from Prodigy were in the article. Their pictures were included too. The drug discussed was Neurontin. Jim Rather was featured. "I haven't felt this good in months" was his comment after taking Neurontin in July. The article goes on to explain what ALS is. Rather said "his mouth loosened upand his breathing flowed easier". There were other reports on Prodigy. "For a while Corinne Ostrander exchanged a wheelchair for a walker. Jack Norton was able to put his hand in his back pocket. Someone else held a ball for the first time in years. Another patient ate a hamburger after a nine-month hiatus. Many are swallowing again." The article went on to mention how the Regeneron's CNTF wasn't as effective as it was believed to be. Doug Ergle of Florida after taking Neurontin is breathing easier. "He no longer choked when food entered his mouth. And the strength on his right side has slightly improved". Corinne Ostrander reported "It was a miracle. My hand uncurled, my neck loosened. I could use my walker again," And the article mentioned Dr. Theordore Munsat mentioning Neurontin as an glutamate blocker at a review meeting in Boston. "Now ALS researchers want to go back and formally test the drug for use against ALS...." The article goes on to mention that "Dr. Munsat is conducting his own study of how patients do on the drug without providing a control group on placebos".... "So far the only hard evidence comes from the laboratory of Dr. Jeffrey Rothstein of Johns Hopkins Medical Institutes in Baltimore. In repeated test tube experi- mentation on a tissue culture, Neurontin protected diseased motor neurons". The artcle also mentions Riluzole. "Riluzole seems to show promise in patients who have bulbar forms of the disease". And then the article mentions the Cephalon drug myotrophin. "The results are to be reported later this year". In summary the article says "Meanwhile, patients are hoping the drug (myotrophin) will be made available on a compassionate basis during the approval process".... "Many ALS patients who where in the study are hoping Neurontin will prove useful". Michael Doliton Sony Medical Systems (10) ===== get a copy of the Newsday article on Neurontin ========== Date : Fri, 02 Sep 94 09:23:14 EST >From : "Mike Doliton" Subject: get a copy of the Newsday article on Neurontin Aug. 30, '94 To All: If anyone wants a copy of the article on Neurontin in Newsday please send me a self addressed stamped envelope in a business size. My address is: Michael Doliton, 275 Eccleston Place, Maywood, NJ 07607. Regards, Michael Doliton Sony Medical Systems (11) ===== There must be more Bulbar people ========== Date : Thu, 01 Sep 94 13:48:43 EST >From : "Mike Doliton" Subject: There must be more Bulbar people To All: I placed a note 3 days ago for Bulbar people to answer a call for a dialog. There must be more of you out there than 4. When you answer the call for Bulbar people please give the following information: 1. Date of Start on Neurontin or Riluzole. 2. Patient's full name. 3. Caregiver's name. 4. Date Diagnosed 5. Any improvement after starting the Neurontin or Riluzole. 6. What was the improvement? 7. Kind of ALS i.e., Sporadic or familial 8. any other treatments you find effective that you want to share with us. When I get enough responses I will publish the results on this bulletin board. I'm looking for about 10 or 20 responses. So far from the responses there are reports of improvement when taking Neurontin. Myself included. Stay well. Regards, Michael Doliton Sony Medical Systems == end of als 123 ==