Date: Fri, 25 Nov 94 14:49:23 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#152 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#152, 25 November 1994) == == == == ------ Amyotrophic Lateral Sclerosis (ALS) == == ------ Motor Neurone Disease (MND) == == ------ Lou Gehrig's disease == == ------ Charcot'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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 400+ 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 .. We Need YOUR Help! 2 .. Riluzole Trial (Phase 1) Ends in January! 3 .. burning skin 4 .. feeding tubes 5 .. re monitoring blood test 6 .. re: Support Groups Pointer 7 .. National Family Caregivers Week 8 .. ALS Association Volunteer Leadership Conference 9 .. ARS - Association pour la Recherche sur la Sclerose laterale ... 10 . muscular dystrophy Usenet newsgroup (1) ===== We Need YOUR Help! ========== Date : Sun, 20 Nov 1994 14:37:47 -0600 >From : "Doug Jacobson" Subject: We Need YOUR Help!! Hello to all of you. For those that don't know me, my name is Doug Jacobson. I was diagnosed with ALS in June of 1991, and am currently participating in the Riluzole trial in Houston. I had my 14 month checkup a couple of weeks ago, and although not as positive as I would have liked to have seen it, it wasn't bad. My legs are going south faster than I would like them to, and although I still walk around the house and go up and down stairs, I rely on my scooter for everything else. Bottom line is, I firmly believe that riluzole is significantly slowing the progression of the disease. The company that manufactures the drug, Rhone-Polenc Rorer, was considering an early end to the trial, due to favorable interim results. But because of a lack of pressure from lobbying groups, they are blowing that off. Riluzole is not a cure for ALS, but it has shown tremendous potential. I think that riluzole, when combined with a couple other drugs in a "drug cocktail" could have phenomenal results. But the drugs need to come out of their trial phase. I would like to urge each of you to contact RPR at the address or phone number listed below. Then have your friends contact them. Then have their friends contact them. Let's let them know that there are people out here who care. Let's let them know that there are people out here who love and are loved. Let's let them know that there are people out here who don't want to die... Rhone-Polenc Rorer 500 Arcola Road P.O. Box 1200 Collegeville, PA 19426-0107 (215) 454-8000 Thanks for your time, Doug Jacobson (2) ===== Riluzole Trial (Phase 1) Ends in January!! ========== Date : Mon, 21 Nov 1994 10:41:12 -0600 >From : "Doug Jacobson" Subject: Riluzole Trial (Phase 1) Ends in January!! My note of yesterday was sent a day too early. I just got off the phone from talking to Dr. Yadollah Harati, who is running the riluzole trial in Houston. Rhone-Poulenc Rorer has decided to end the double-blind trial early, and all participants will go on open-label, full dose in January 1995. This does not mean drug approval, or general availability, but Dr. Harati indicated that they were proceeding with preparation of a protocol for distribution to large numbers of people. Determination of drug efficacy will be the deciding factor, and that remains to be seen. I would continue with the campaign to contact RPR, and please be advised that I misspelled their name in my original note. It's Rhone-Poulenc Rorer, not Rhone-Polenc Rorer. I am trying to get a fax number for them. God bless you all, Doug Jacobson =====------=====------=====------===== === Doug Jacobson === === Certifiable HyperCard Nut === === Friendswood, TX === === === === Email: === === jacobson@phoenix.phoenix.net === === jacobson@aol.com === =====------=====------=====------===== (3) ===== burning skin ========== Date : Thu, 24 Nov 1994 13:01:51 -0800 >From : lwinlaw@cyberstore.ca (Lyall Winlaw) Subject: ALS Digest My wife diagnosed with ALS in July this year has problems with her skin feeling as though it is burning (mostly at night) and she has great difficulty sleeping. As well she gets hot flashes, not connected with menopause. We received one suggestion from a member, regarding the use of a light tranquilizer, but we just wondered if this is a widespread problem with ALS patients.If so are there any other thoughts on relief. Sincerely Lyall Winlaw (4) ===== feeding tubes ========== >From : METE ( Norway ) Date : Fri, 25 Nov 1994 11:51:35 MET Subject: feeding tubes Dear ALS networkers, I am following the digest for my father in Turkey. He is 61 and has had ALS for 3 years. He has lost most functions, including (recently) swallowing. We believe he has about 40 percent lung capacity. For the last few weeks he can but eat a few spoonfuls of food. He has been getting nutrition through serum during the last month and has had considerable weight loss. He has been considering to have a feeding tube through the stomach, but has doubts due to the possible complications. The doctors say it is a fairly easy operation (can be done at home), but they are not sure if it is worth the trouble for him - they believe serum through the artries in arms is essentially just as effective. We would very much appreciate your comments about the your experiences which could help my father in his decision. Best wishes, Mete Pamir (5) ===== re monitoring blood test ========== Date : 24 Nov 94 15:19:25 EST >From : Wayne Phillips <70303.173@compuserve.com> Subject: re monitoring blood test A year after my diagnosis, I had more tests done at Dr. Engel's clinic at the Hospital of the Good Samaritan in Los Angeles. I had low levels of B12 and folate and slightly low iron. I had high IgG. Dr. Engel suggested vitamin therapy or immunosuppressive chemotherapy. I did vitamin therapy for several months: oral B1, B2, B6, folic acid, iron, and IM B12 injections. It didn't halt my illness, so I stopped all but the B12 and folic acid. I'm still taking 1 ml. B12 IM daily and 5 mg. folic acid daily, and the few times I've missed either I'm *much* weaker and fatigue easily. (Since then folic acid supplements taken by pregnant women has been shown to significantly reduce prenatal CNS birth defects anencephelay and spina bifida!) Then I tried chemotherapy for 8 months (prednisone, cytoxan). It took 6 months just to depress my counts to the target range, cytoxan peaking at 350 mg./day. During the last 2 months I went from walking unassisted to requiring a wheelchair; it didn't work. In my case the IgG may be protective! During and after chemotherapy I also show low lutenizing hormone (LH) and testosterone and high follicle stimulating hormone (FSH). These may be due to testicular damage from the chemotherapy. Testosterone supplements were ineffective, and may even have made my illness progress faster. FSH/LH injections ("pergonol": *quite* expensive) did/do seem to provide strength and slow, but not halt the progress. (ALS and FSH/LH is another story.) Even with these injections my LH still tests low. I haven't tracked these much during my illness. Remember, my ALS may have a different cause than yours, so your results may differ. Consult your neuro. Wayne (6) ===== re: Support Groups Pointer ========== Sorry ... the address of John M. Grohol, creator of the Support Groups Newsgroup Pointer, is: grohol@alpha.acast.nova.edu His pointer list was there in ALS Digest 151, as was his name as the creator, but I forgot to include his address. bro By the way, he has created over a dozen newsgroups. Anyone wanting to start a alt.support.als should probably ask him for advice. Also, please look at Section (10) of this issue re alt.support.musc-dystrophy. (7) ===== National Family Caregivers Week ========== According to the National Family Caregivers Association (9621 East Bexhill Drive; Kensington MD 20895-3104; TEL 301-942-6430; FAX 301- 942-2302) National Family Caregivers Week is November 20-26, 1994. (8) ===== ALS Association Volunteer Leadership Conference ========== The next ALS Association Volunteer Leadership Conference will be April 20-23, 1995 at the Regal Riverfront Hotel in Saint Louis. For more information: ALS Association; 21021 Ventura Boulevard, Suite 321; Woodland Hills CA 91364-2206; TEL 818-340-7500, FAX 818-340-2060. (9) ===== ARS - Association pour la Recherche sur la Sclerose laterale amyotrophique ========== I have a copy of Newsletter No. 23 (October 1994) of the ARS (France). It looks newsworthy but I cannot read French. I will send to anyone who can read it and summarize the contents for us here. Send me e-mail and include your mailing address if you want a photocopy of No. 23. rgds, bro (10) ===== muscular dystrophy Usenet newsgroup ========== Date : Thu, 17 Nov 1994 17:15:11 EST Sender : L-HCAP List >From : Bill McGarry Subject: Handicap Digest # 3653 ------ Subject: Mda usenet group Subject: Muscular dystrophy support usenet group >From : turbokev@iglou.iglou.com (Kevin M. Rudolph) I would like to start a new usenet group called alt.support.musc-dystrophy which would be a support forum for people that have muscular dystrophy where they can discuss their disease or help each other discuss the way MDA treates them. If interested please post a message on alt.config in support of alt.support.musc-dystrophy as soon as possible at least by 11,18,94 Kevin Rudolph turbokev@iglou.com === end of als 152 ===