Date: Wed, 2 Nov 94 15:52:15 EST From: Bob Broedel To: Stuart.Neilson@brunel.ac.uk Subject: Re: ALS Interest Group List =============================================================== == == == ----------- ALS Interest Group ----------- == == ALS Digest (#131, 06 October 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. The ALS Digest is == == published (approximately) weekly. Currently there are == == 360+ 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 .. BDNF - patient report 2 .. marijuana/MARINOL/BACLOFEN/DANTRIUM 3 .. re: Forbes Norris MDA/ALS Research Center 4 .. BDNF - company report 5 .. neuroprotective effects 6 .. Riluzole in ALS (letter) (1) ===== BDNF - patient report ========== Date : Mon, 3 Oct 94 21:05:19 MDT >From : "Gerald Armand Milette" Subject: BDNF Well I've been on BDNF for a month now and I'm happy to report that I'm still noticing improvement. The most improvement seems to be in the larger muscle groups in the legs and arms. My walking is still improving. I can now reach for the switch on my ceiling fan with little trouble. When yawning my jaw does not snap back like it used to. The changes seem to be more in terms of control and steadiness than improvement in strength. I have begun a moderate weight training program, however, with the hope that the changes I've noticed signify healthier neurons which may be reinnervated. The news is not all good, however. In my dexterity tests my left hand fared worse than a month ago. My right hand, however, fared a little better. In any event, I do feel like the drug is helping, if not by improvment, then by a slowdown in the rate of progression. Is there anyone else out there taking BDNF? Gerry (2) ===== marijuana/MARINOL/BACLOFEN/DANTRIUM ========== Newsgroups: alt.hemp, alt.drugs, talk.politics.drugs >From : gjh@galen.med.Virginia.EDU (Galen J. Hekhuis) Subject : Re: No evidence to justify legalizing marijuana Keith Lewis wrote: >The patients do say that Marinol gets them stoned. But the reasons I have >heard for prefernce of black market MJ are: >2. Smoked marijuana takes effect *much* more rapidly. 5 minutes vs. 2 >hours. It is much easier for the patient to self-administer the dosage he >feels is proper (one that will have the desired effect but not make him too >stoned to function) if he can smoke a little and wait 5 minutes before >deciding whether to smoke more. In my experience, it is more like 7 seconds. I have primary lateral sclerosis, which shares some symptoms with the more "popular" amyotrophic lateral sclerosis (Lou Gerhig's Disease, or what Stephen Hawking has) and the even more common Multiple Sclerosis. Anyway, one thing these things have in common among many is muscle spasm. I tend to describe it as one toe going north and its neighbor deciding to go south, both of them determined to take the rest of my foot with them. I can't do a thing about it, well, as far as conscious control goes. It wakes me up out of a sound sleep sometimes. There are several (well, two) drugs that address the problem. One of them is Baclofen. To put it fairly mildly, it sucks. Dantrium is the other drug. It is even worse. Both come in pill form. Even under the best of circumstances, you can't expect a pill to work for 1/2 hour to 45min. Anyway, if muscle spasms wake me up, I can smoke, and get instant relief, or... Guess which I choose. Besides, Baclofen doesn't work that way anyhow, it needs to build up over several days. Both my neurologist and the pharmacist who filled the prescription warned me about that. I found out later about the rather severe things that might happen if you quit using it abruptly. >3. Marijuana, even U.S. black-market marijuana, is cheaper than Marinol by >at least a factor of 4. If the plant was grown and distributed >legitimately, this factor would increase even more. Entirely true. And it works. I know that for a fact and I am hardly alone in that knowledge. >I would be interested in more information about this. What doctors have >said this? Have any medical associations endorsed it? My brother was >taking tons of athsma medication until he started smoking pot. I wonder if >there is a connection. I don't know any "mainstream" medical types that have endorsed this, it seems like the incorrect thing for folks to do now, career-wise, that is. You can even find a lot of anti-drug propaganda being presented as educational material to doctors these days. But cannabis has long been known as a bronchial dialator. I used to work with a bunch of physiologists in smooth muscle research. The doctors would study capilary circulation mainly, but what goes on in the lung? I'll bet incredible discoverys could be made, if only it were legal, or at least scheduled differently... -- Galen Hekhuis Np.D. gjh@virginia.edu We are the Neanderthals of the future (3) ===== re: Forbes Norris MDA/ALS Research Center ========== Date : Wed, 5 Oct 1994 16:28:14 -0700 (PDT) >From : John Oda Subject: ALS Information I am writing to you from the campus of San Francisco State University. However I am writing on behalf of my wife who works at Community Relations at the California Pacific Medical Center here in SF. She has received several calls in the past few months regarding Amyotrophic Lateral Sclerosis treatment at the hospital. Apparently her number has been listed on the Internet as a contact person at the hospital. (I got your e-mail address from the Neurosciences Internet Resource Guide.) She has been happy to give out information and referrals however since CPMC is going through major personnel, departmental, as well programatic changes, she wanted to let everyone know that at this point the best place to get information would be direct contact: The Forbes Norris MDA/ALS Research Center 3698 California Street, 5th Floor San Francisco, CA 94118 TEL (415) 750-2398 * * * * * * * * * Just a few words about the center taken from the 9/5/94 newsletter which you can publish if so desired. * * * * * * * * * Last month ALS researchers at the California Pacific Medical Center joined forces with the Muscular Dystrophy Association with the establishment of the Forbes Norris MDA/ALS Research Center, the largest clinical research center for amyotrophic lateral sclerosis in the United States. The new center, which cares for over 250 patients, offers comprehensive diagnostic and treatment services for patients, including telephone advice, education, in-home nursing visits, support groups and medical equipment loan program. CPMC patients also have the opportunity to participate in clinical trials of potential new drug treatments. Currently 125 Norris Center patients are enrolled in these clinical trials. Dr. Robert Miller, director of the new Norris Center says the clinical trials and research into pathological processes offer new hopes for ALS patients and their families. "We now have several rational approaches toward developing a treatment, whereas just a few years ago, we had nothing. All of these lines of evidence are converging toward what we think will be a major breakthrough." * * * * * * * * Good luck with the continuation of your important work. John Oda Associate Director Community Involvement Center San Francisco State University (4) ===== BDNF - company report ========== HEALTH NEWS DAILY (Wednesday October 5, 1994) INDUSTRY NEWS: Regeneron/Sumitomo BDNF agreement. Regeneron/Sumitomo BDNF agreement: Regeneron Pharmaceuticals announces Oct. 4 that it has received a $1,585,000 manufacturing payment from Sumitomo under a collaboration agreement for R&D of brain-derived neurotrophic factor in Japan. The payment covers Regeneron's first three months of developing manufacturing processes and supplying BDNF and other materials to the Japanese firm. The Tarrytown, New York-based firm also is developing BDNF in the U.S. under a partnership with Amgen, which is conducting a clinical trial of BDNF in amyotrophic lateral sclerosis.... (5) ===== neuroprotective effects ========== Newsgroups: alt.psychoactives >From : bwhite@oucsace.cs.ohiou.edu (William E. White ) Subject : Re: Special K = PCP Woodrow W. Baker wrote: >: William E. White (bwhite@oucsace.cs.ohiou.edu) wrote: >: Murple wrote: >: set of effects. MK-801 is being investigaged for its neuroprotective >: effects (against excitotoxicity from endogenous quinolinic acid and >Can you give particulars. My mother-in-law has ALS (Lou Gehrigs disease) >and one of the current theories is that it is caused by excitotoxicity >from free radicales. Okay, here goes. In several different types of brain trauma (e.g., physical injury, high fever, extended siezures, infection, etc.) at least some of the damage to brain tissue does not come from the trauma itself, but rather from the body's response. This, as far as current knowledge (and my awareness of it) reaches, is the process: The trauma, via one means or another, causes an influx of white blood cells. In some cases (e.g., physical injury) this can be from actual breaking of blood vessels; in some cases the blood-brain barrier is compromised by other means. One particular class of white blood cells secretes an interferon (I *think* it's gamma-inteferon, but it could be beta-interferon; the two have opposite effects on quin. activity). This interferon activates an enzyme which transforms a tryptophan metabolite into quinolinic acid. The quinolinic acid then acts as a potent excitotoxin on excitatory amino acid (EAA) receptors, killing neurons. This is especially true in the case of (e.g.) poliomyelitis, where the spinal injury is likely due exclusively to quinolinic acid excitotoxicity. Blocking the quinolinic acid has, in experimental animals, completely prevented damage. Just why quinolinic acid exists is unknown. My belief is that it is one of the weapons that the immune system uses to destroy infected cells, and that outside the CNS it's a good thing; the EAA receptors just happen to be exceptionally susceptible to it. It might also be an undesirable side-effect to other processes. As for blocking quin., strategies center on: - blocking the EAA receptors by using NMDA antagonists (which don't affect non-NMDA EAA receptors, unfortunately). NMDA antagonists include PCP, ketamine, MK-801, dextromethorphan, etc. - picolinic acid, which (for whatever reason) seems to counteract quinolinic acid (NOTE: I don't think picolinate salts cross the blood-brain barrier, although it'd be nice if they did). - preventing quinolinic acid from being produced in the first place. One of the interferons (beta, I think) seems to do this. - reducing the amount of tryptophan available to be converted into quinolinic acid (this is hard to do, since the tryptophan to quinolinic acid pathway is very efficient, much more so than the tryptophan to serotonin pathway. Which is why people with EMS had to stop taking tryptophan, even after exposure to the contaminant -- ethylenebistryptophan -- ceased.) I don't think any of these strategies would help in the case of free radicals, since I doubt quinolinic acid is involved. -- | Bill White +1-614-594-3434 | bwhite@oucsace.cs.ohiou.edu | | 44 Canterbury, Athens OH 45701 | finger for PGP2.2 block | -- (6) ===== Riluzole in ALS (letter) ========== ================================================ Title : Riluzole in amyotrophic lateral sclerosis [letter] Author : McRae KD Source : New England Journal of Medicine : 1994 Jul 28;331(4):272-3; discussion 273-4 ================================================ Title : Riluzole in amyotrophic lateral sclerosis [letter] Author : Burgerman RS Source : New England Journal of Medicine : 1994 Jul 28;331(4):273; discussion 273-4 ================================================ Title : Riluzole in amyotrophic lateral sclerosis [letter] Author : Murphy JR Source : New England Journal of Medicine : 1994 Jul 28;331(4):273; discussion 273-4 ================================================ Title : Riluzole in amyotrophic lateral sclerosis [letter] Author : McKee P; Fuller GN; Stevens DL Source : New England Journal of Medicine : 1994 Jul 28;331(4):272; discussion 273-4 ================================================ Title : Riluzole in amyotrophic lateral sclerosis [letter] Author : Rogawski MA Source : New England Journal of Medicine : 1994 Jul 28;331(4):273; discussion 273-4 ================================================ === end of als 131 ===