Date: Mon, 2 Jan 95 22:33:32 -0500 From: Bob Broedel To: als@huey.met.fsu.edu Subject: ALSD#162 ALS-ON-LINE =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#162, 02 January 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 == == 430+ 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 .. familial ALS 2 .. contribution to ALS Digest 3 .. Your friend Robert Ray 4 .. prions & ALS 5 .. from the multiple sclerosis list 6 .. CNTF 7 .. Minister turns down veteran's appeal 8 .. IGF-1 Myotrophin (1) ===== familial ALS ========== Date : Mon, 2 Jan 95 12:57:29 PST >From : andrea@tc.fluke.COM (Carey Denise Pickens) Subject: familial als My husband has familial ALS. He an his brother were diagnosed within 2 months of each other,and now also their cousin. They are all in their late 30's, their parents are 60+ and no ALS as yet. Both borthers have been exposed to a virus, mono-Epstein-Barr 3 0r 4 yrs. ago, my husband still has some signs of the virus. Could that virus "trigger" the disease at an early age? Also the family has a history (10+yrs) with ALS but the two brothers are progressing somewhat fast. Any theories out there? Thanks, Carey (2) ===== contribution to ALS Digest ========== Date : Mon, 2 Jan 1995 03:04:30 -0500 >From : DanB5974@aol.com Subject: contribution to als digest This is on behalf of a friend Robert Ray, 10 years younger than me who's had ALS for about two years. He's had no limb control, been on assisted breathing for 9 months, and is losing control of throat, although he seems to be marking time, perhaps helped by Valium. He's got quite a scientific mind and many ideas. And myself, I have a technical, not medical background and I don't want to study the chemistry aspects of this thing. So that's where I come from. My wife and/or I visit him daily since he is a bit distant from other friends and his children. This contains the following: 1. his ideas about what he did to reduce cramping 2. Concern for blood donating 3. Research that is significant to him 4. His feelings of ALS as autoimmune disease Related thoughts 5. What he beleives caused his ALS 6. Concern for ALS as orphan disease, contrast with AIDS This was dictated by Robert using a small tape recorder and notes. With the tube pumping air into his throat, he was not able to talk complete sentences and transcribing was difficult. He's in the THC (was Fifth Avenue) hospital in Seattle at the moment. Some of his ideas are unusual. Some of them can't be ignored. Here's Robert: 1. Reducing cramping There is a drug called Dextromethorphan Hydrobromide. It is a common ingredient in all cough syrups, especially Nyquill. I first of all I don't suggest you go out and buy a dozen bottles of Nyquill, and it would cost you and arm and a leg. If you can find a compounding pharmacist in your area he should be able to do this with over the counter non-prescription drugs. Every morning when I woke up I do stretch before I get out of bed. Well, my legs would stretch - muscles pulling. No matter what I did there was no relief for the aching. And I had some some cramping in toes and fingers as well. So I read in a bulletin that they were using Dextromethorphan on the East cost in a clinical trial. So I was able to find a compounding pharmacist who makes his own drugs. He was able to order me a bottle of Dextromethorphan Hydrobromide in its pure form. It was about $100 for 1 pound, enough for a year. If you do find a compounding pharmacist try not let them cap it up for you and sell it to you cap by cap because that is a rip off. If they do insist in capping it, make sure they put no filler drugs in, just pure Dextromethorphan Hydrobromide . Either 0 or double 00 size caps. You will have to find your own level of dosage. And now the Dextromethorphan Hydrobromide if taken internally will upset your stomach and that is not the best way to take it. Take it in very small amount because it can be very powerful. Put some under your tongue. It tastes terrible but keep it there as long as you can while you build saliva to thoroughly dissolve it. At that time you can swallow it and drink something that tastes good. It is a glutamate blocker. If you will refer to the New England Journal of Medicine March 4, 1994 issue, page 615, the Dextromethorphan Hydrobromide works on the very first neuro receptor of calcium. Now it is a glutamate blocker, meaning that the large doses slow all your muscles down and give you a funny walking gate. Too much I find gives you a high. Set outside and watch the trees grow. Very peaceful effect. Just enough to alleviate the symptoms.Dextromethorphan Hydrobromide seemed to help for a long time, 6 months to a year. I took it daily. It did relieve pains and I was able to work. However, as the diseas progressed, Dextromethorphan Hydrobromide began to have a negative affect, made my muscles weaker. That could have been caused by closing the first channel, so more calcium would go to the second channel of valium constriction - apparently more toxic. Sort of a double edged sword. It will releive aches and pains, however, over use will cause weakness perhaps progression of the disease. I offer no warrantees or such. It is something that I experimented on myself. It will help aches and pains but I imagine it will progress as well. Be very carefull about side affects or the amount that you take. The best advice at this time is that it is not a cure but can modify the pain caused by your ALS. Yes, I had problems with the aching, comes without warning when waking up. The reason Valium/Oxazepam helped sleep was not because it provided relief from the terrible aching in the muscles. 2. Concern for Donating Blood One of the things that has occurred to me is that originally the typical age of someone with ALS has been typically more than 70 years of age. It has dropped as low as 20. Because the disease is transmitted through Immuno Globulin (IgG) serum, people may be giving blood in transfusions before they show symptoms, so the blood supply may be being contaminated. I'm not sure how they check blood for serum, particularly for ALS IgG antibodies or the B cell that creates the ALS IgG antibody. It's a scary phenomena. It probably should be taken up with the National Institute of Health or Dr. Taylor of Baylor University of Dallas Texas if this is how the disease could spread. 3. Research Even though famous figures such as Senator Jacob Javits and David Niven died of ALS, there has been no attention to the ALS. The disease is gaining 30,000 victims a year. Until two years ago, there were no clues whatsoever. Then they found a genetic . Dr Apel found the IGG. [See NEJM March 4, 1994 issue, and other reports.] 4. ALS as autoimmune disease The body is programmed by genome, including allergies.The immune system - thymus gland - one of the T cells is the T suppressor supposed to suppress antibodies and the B cells. There's been damage to the B cell that produce the bad antibodies such that the T suppressor cells which would normally suppress those those B cells are not able to do that. So the B cells keep on cranking out the bad antibodies which are interfering with the function of the nerves (attacking motor neurons by mistake). So innoculation with T cell suppressors would turn off B cells, stop them from making antibodies. Every receptor is like a lock and key. Glycene and asperatate (nuetrosweet) are the key that turn on middle calcium receptors. They are sweet tasting substances. 5. What I believe caused my ALS In my case I believe I gave myself ALS. For reasons beyond the scope of this paper, I drank a bottle of anise oil. The minute I did all the sinus swelled as if I had been punched out and my throat went (closed off like a bee sting). And I could not stop salivating. Certain foods, the common denominator of which are those that contained corn starch or vinager would make me comatose or unable to think clearly. Sweet & sour, anything containing salad dressing would be a problem. I couldn't drink coke. Basically, only meat, potatoes, crackers, and sometimes coffee didn't give any reaction. I could tell when a food might give a problem; I would have a metallic sensation in my mouth and my tongue would swell up to touch my teeth. It is like the aura that precedes migranes. Once I was sitting, and apparently had too much coffee. I felt as if I had flipped over backwards. So for 1-1/2 years I did a reduction diet limiting to foods that had no reactions. Eventually I could tolerate most foods. At work, it was a high stress environment, so to avoid having a problem during the work day, I would avoid eating until later. Vinager still bothers; makes my mouth, lips burn. 3 to 6 months after I took the anise oil, my left leg began to shake, lockup, etc. While driving home [a 1 1/2 hour commute] the left thigh would quiver and twitch all over the body. Then other muscles began to do the same thing to the point they felt like they were shivering. When I pointed this out to a neurologist he said I was advanced. I pointed this out to other doctors and they could make nothing of it. I had toe drop in the morning when waking, and cramps. I was taking anti-depresents. I wore short-sleeved shirts - alwayus warm, sweating profusely. Side affects of medicine? Then I was diagnosed with advanced ALS. I believe anise oil with the sweetness created either by glycene or aspertate caused a reaction of the autoimmune system [in my case]. I am very interested in knowing the rates of ALS incidence in France and Greece, where anise is used extensively in liquors and foods. Also, I would note that there is a higher incidence in the northern regions, expecially around Seattle and Bellingham, Washington. I don't understand why. [Robert and I talked after he made that remark about the fact that there could be a number of things banding together in stressing the system. Some studies have been made of the dust mite, which has a higher population here, due to things not drying up as much and due to animals, etc. being inside a lot due to the wet weather. We also talked about formaldehyde outgassing from particle board, etc. He knows of having a reaction (headache, etc.) to that; had to move out of a mobile home because of it. And I would note that he had a long 1 1/2 hour commute, had been divorced, etc.] 6. Concern for ALS as orphan disease, contrast with AIDS At this point in time the Clinton Health Plan is in motion would be a good time to hit this nail on the head. The Presidential Inquiries and Comments phone number of the White House is 202-456-1111. The comments that are made are taken into account. So if we are to make an attack on this disease this is probably one way to get some attention. We should call there to express opinion about health care relevant to ALS research, treatment and patient care. Because ALS is an orphan disease, with only about 30,000 people per year affected, with 5,000 a year dying, the best way to get adequate attention may be for a group of ALS patients to be on the FDA steps without wheelchairs or other support, without respirators, without medical attention. It would be very difficult for the police to remove them, and it would certainly get media attention. The other thought is the that the only organization that has any control over the FDA is the GAO. The FDA to a degree has created a monopoly. They have set standards so high that only the very rich drug companies can see the drug trials through (and they will only do so on drugs that will have the volume to be cost effective). GAO ought to come in to investigate the practices of the FDA. Without the FDA we might be able to get drugs on the market sooner. At the present time getting drugs from start to market takes ten years; obviously a lot of ALS patients are going to die in this period. Note that with the publicity of AIDS, AIDS drugs get approved in two years start to finish, but ALS doesn;t have that publicity. We need to organize and take affirmative action with calls to Congress or perhaps flood the FDA with phone calls. It may also be noted that the largest contributers to congress by lobbyists are drug companies. There are obvious conflicts of interests. transcribed and sent by Dan Baker, 10616 NE 153rd, Bothell WA 98011 206-488-6997 (3) ===== Your friend Robert Ray ========== >From : vitale@dectlk.enet.dec.com Date : Mon, 2 Jan 95 14:24:55 EST Subject: Your friend Robert Ray Dan: The mean onset of ALS, as I understand it is 56. Also, with respect to Dextromethorphan, they're doing some studies in San Diego. I had asked them about DM about a year ago. Apparently, DM is metabolized so quickly that another drug Quinidine (sp?) is used to make the DM effective. Without that, I was told, DM would not be efficatious. regards, \t (4) ===== prions & ALS? ========== >From : jaks007@aol.com (Jaks007) Newsgroups: misc.health.alternative Subject : Re: The Joy of Eating Lamb Date : 24 Dec 1994 17:35:52 -0500 >The January 1995 issue of _Scientific_American_ has a good >article on prions, the infectious agent for several forms >of spongiform encephalitis (i.e. diseases which turn your >brain into a sponge-like material). These incurable fatal >illnesses include scrapie (a sheep disease) and Creuzfeldt- >Jakob Syndrome (a human disease). The article implies that >even one prion molecule can catalytically destroy the brain... I read this article and was interested in a statement that the author made on page 4 in section 2 of the article: "Ongoing research may also help determine whether prions consisting of other proteins play a part in more common neurodegenerative conditions, including Alzheimer's disease, Parkinson's disease, and amytrophic lateral sclerosis." I had a relative who died recently of amytrophic lateral sclerosis. When he first became sick, I wondered if it had anything to do with the fact that he ate an unusual amount of shrimp, crab and lobster. He would often eat a meal of shrimp with nothing else. I went to the library and got a biography of Lou Gehrig. It mentioned that Lou would often sit on the floor and eat a mountain of crab meat with nothing else. This article made me think that maybe my idea was not so crazy, after all. Any comments from anyone on this? (5) ===== from the multiple sclerosis list ========== Newsgroups: alt.support.mult-sclerosis Date : Sun, 18 Dec 1994 13:09:49 -0500 Sender : Multiple Sclerosis Discussion/Support : >From : Jerry Torczyner Subject : Re: I've returned with a new PC. Thanks for the quick reply. WELL, my old PC (in the generic sense- "personal computer" as they are), was an Apple IIe I was using on AOL's system, until they dropped support and usability of them 11/1/94. My major stories about MS are still on that platform, such as the MS cluster of my neurologist where 20 of 30 MS patients were stewardesses flying from the nearby San Francsco Airport to the Orient and getting MS. This is similar to 16 of 17 polio persons in Manilla being visitors! (No prior immunity). See also Dr Alvord in a '87 (?) article in Jnl of Childhood Immunity. In my case I went to the Orient to a very polluted area, got a Super Antigen exposure (Like George Bushe's visit), went back 4 years later, got a new infection and 2 months later MS my first MS signs. Also two friends who went with me on the first trip, returned to do followup after the 2cd. WOULD YOU BELIEVE, ALL THREE OF US GOT MS. I am the survivor. My patent attorney went to Kyoto/Osaka as I did (as Lou Gehrig had done in '34 or so) AND GOT ALS/MND. I can supply more info. My MS is in remission, but the sutuation was similar to EAE introduction in Mice. It is the SECOND Foreign myelin exposure that paralyzes the mice. It was my second (& friend's visit's) that gave us ALL MS! The former Pan Am flight attendant union was 2 miles from my Neuro's office. La Shana Tova, happy holidays! Shalom (6) ===== CNTF ========== THOUSAND OAKS, Calif., Dec 30 (Reuter) - Amgen Inc said it completed its acquisition of Synergen Inc through the merger of its Amgen Acquisition Subsidiary Inc into Synergen. As a result of the merger, Synergen is now a wholly owned subsidiary of Amgen, Amgen said. < the rest of article deleted > (7) ===== Minister turns down veteran's appeal ========== Publication: Calgary Herald 12/31/94 Title : Minister turns down veteran's appeal Byline : Andy Marshall --- Minister turns down veteran's appeal --- --- Calgary man says illness linked to army service --- The federal minister for veterans affairs has rejected an appeal for a pension by a Calgary man dying of a vicious disease he's sure is linked with his Canadian army service. A letter from Lawrence MacAulay just before Christmas advised Calgary veteran Arnie Briese his application for a disability pension could only be considered with new medical evidence his amyotrophic lateral sclerosis (ALS) is related to his military service. < parts deleted > Although definitive causes are still unknown, Calgary neurologist Ranjit Ranawaya is among medical professionals suspecting long-term exposure to neurotoxins such as lead may predispose certain individuals to ALS. Briese, who worked for 10 years as a radio operator doing maintenance on lead acid batteries, presented this as evidence in his 1 1/2 years of appeals to the Department of Veterans Affairs. What has him incensed are earlier awards for disability pensions to former sailors with ALS who had long exposure to lead in oil-based paint on board ships. < parts deleted > His only tangible hope remains an Ontario court appeal on behalf of other veterans in similar circumstances supported by the Ontario ALS Society. It is due to be heard in February. < rest of article deleted > (8) ===== IGF-1 Myotrophin ========== The Record, Northern New Jersey 12/28/94 MEDICATION MILESTONES OF '94 Byline: Bloomberg Business News Drugs to treat or ease the symptoms of chicken pox, Alzheimer's disease, arthritis, cancer, and strokes were among the most significant in development during 1994, an industry group said Tuesday. < parts deleted > Cephalon Inc.'s Myotrophin, a naturally occurring protein, was identified as a potential treatment for patients with amyotrophic lateral sclerosis, also known as Lou Gehrig's disease. < rest of article deleted > === end of als 162 ===