From alt.support.mult-sclerosis Tue Jun 3 19:35:16 1997 From: tapsycon4u@aol.com (TAPSYCON4U) Date: 1 Jun 1997 00:20:20 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: I.V. Methylprednisolone I've been on it a few times. It definately stopped progression for me. It breaks up my sleep pattern when and after I'm on it, I can count on about a month of sh, crappy sleep, real creappy for two or three weeks- 2 hrs, than 1 hr. than 1/2 hr and then maybe another 1/2 and that's it, for a few weeks. But the good news is, it works. I've been on betaseron for about two years but that in itself was not keeping me from declining. Then I switched to an MS expert Dr & professor at Wake Forest U. who was the first Neurologist of three who knew to do it, and he didn't weait a minute. So the 3 years prior, my mri SHOWED A 200%-300% INCREASE in crease in lesion burden. Since I've started the use of high dose steriods, only upon exaserbation, the MRI one year later showed 0% increase! So for me it works. The secret however, is you have to catch the exaserbation with the high dose steriods within two or three days max, otherwise the inflamed part of the nervous system attracts them antibodies which eat the mylin. That's why HIGH does steriods work well, they are a very powerful antiinflamatory. And my doctor tells me that an exaserbation starts with inflamation of the nervous system that can be stopped before damage occurs with attack on mylen. He's got a Ph.D. in neurology besides being the top MS specialist in the South East. He runs experiements for Berlex and all. If you have any questions for me, e-mail me at GENMS@aol.com. I hope that gives you some basics of what I know. You might also want to visit my Web Page at http://members.aol.com/TAPSYCON4U. I'm a psychologist and do programs and stuff on MS, as well as some consulting stuff. I should have some stuff in there soon about MS, Stress & Emotion, after I finich reading up on it. There does seem to be a connection in what I've read so far. But most doctors aren't up on stuff, and stress, well it's so hard to define. See ya. Tom Anderson From alt.support.mult-sclerosis Fri Jun 6 14:36:35 1997 From: tfrew@pcug.org.au (Trevor Frew) Date: Wed, 04 Jun 1997 16:18:02 +1000 Newsgroups: alt.support.mult-sclerosis Subject: People with MS Web Page This time I'll get the address right. Here goes: I've published a web page for People with MS. Its address is: http://www.pcug.org.au/~tfrew/pwms.htm Have a look and tell me what you think. How should it be improved? Should it be deleted and not published? :) __________________________________________________________ Trevor Frew tfrew@pcug.org.au http://www.pcug.org.au/~tfrew --- From alt.support.mult-sclerosis Thu Jun 19 21:27:13 1997 From: Karen Hedland Date: Tue, 17 Jun 1997 10:03:46 -0800 Newsgroups: alt.support.mult-sclerosis Subject: ms&raising a family I couldn't decide who to reply to so this is just a general reassurance. Susan indicated her oldest was 5. So was mine. I also had a 3 yr. old and my youngest was 3 months. I had had a fling with optic neuritis and some other limb problems. The doc said gout.??// A month later I completely lost my eyesight and had a bunch of violent symptoms. They got me out of Alaska to Minn cuz no one knew what was wrong. But that was 26 years ago. I came back after a few months and was able to cope quite well until my kids were in high school. Three teenagers fought over my car,but kids are amazing. Through the years they had watched the progression to a cane,crutch,walker and finally the wheelchair. They understood that I worked at a job that wasn't physical and hired people to help with physical jobs. Thank God for a supportive husband who could do the physical activities with them. Today these kids are all college grads who have learned to fught like their mom. They got over trying to do things for me almost to the point of bugging me when they said "Come on Mom. You can do it." But you can raise a family. If you ever patent the formila for patience at having to wait for kids to do things at the speed you want instead of their speed,you could be rich. Good luck. Karen in Alaska From alt.support.mult-sclerosis Mon Jun 23 14:11:56 1997 From: Tom Tringali Date: Sat, 21 Jun 1997 07:50:23 -0700 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4-AP Paul Havener wrote: > > I have had a total of 5 replies regarding question of 4-AP, far fewer > than I had hoped to get. For such a small number, statistics don't mean > much. My wife, Jackie is preparing a seperate E-Mail to go to each who > responded to her original. > Problem, I'm new user to system and I wasn't sure it was working or that > I wwas using it correctly. I have Prodigy as well as AT&T Worldnet and I > find Prodigy confusing - I haven't been sure the messages were posted. Paul, I have been using 4-ap for about a year. I find it helpful. It has improved my energy level and stamina. I am able to walk better. I am taking 10mg 4 times a day at 6:30AM, 10:00AM, 1:30PM, and 5:00PM. If I am doing any thing in the evening I'll take a capsule at 8:30PM. I have not had any side effects. Recommended daily dosage is based on body weight .5mg per kilogram of body weight. I weigh 198 lbs which works out to 90 Kg. This works out to 45mg a day. I notice the benifit from 4-AP more if I miss a dosage. Which happens if I am not quite sure if I had taken my scheduled dosage. Please respond to me at trinky@juno.com as my access to the internet is through work and I do not like to use this account for personal e-mail. Tom Tringali From alt.support.mult-sclerosis Tue Jul 29 10:52:23 1997 From: rvchamb@mindspringDOT.com (Richard) Date: Sun, 27 Jul 1997 16:03:54 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Chemo good for MS?? In article <19970727001401.UAA10195@ladder01.news.aol.com>, kathykw@aol.com (KathyKW) wrote: > In talking to another MS friend she said that a girl at her support >group is getting Chemotherapy for the MS. I never heard of it. Have you? Hi, Chemo, for me, did work for a short time. I went to the hospital about every 6 weeks for a 24 hour stay and had one dose of the chemo drug 'Cytoxin'. (not sure on the spelling), followed by prednesone and glucose bags (IV) interchanged every four hours. The results were greater mobility and flexability. The effects initially lasted about 4-5 weeks then gradually degraded until I was back to my 'usual' gimpyness. I stayed on chemo for about 2 years. By then, the positive effects were only lasting about 1-2 weeks and my doctor and I decided the negitive could start to outweigh the positive. As with almost any drug there can be nasty side effects, and any chemo drug certainly has its share. Fortunately for me, I didn't experience any of them so I only have positive thoughts on chemo. To finish this rambling, chemo did help with my mobility. From alt.support.mult-sclerosis Tue Jul 29 16:58:42 1997 From: egstern@beatrice.fnal.gov (Eric G. Stern) Date: 28 Jul 1997 22:49:34 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: MS cause found or not? In article Paul Flavell writes: >Yes and excerpts of the article were posted. Only 2 people responded - one >to say thanks, the other to complain that this was still another crackpot >theory that should be subjected to Koch's postulates or ignored. (By the >way, even the very naming of the bacteria, Borrelia mylephora, is in >dispute.) > > >I don't believe that Koch's postulates would have worked in this case, >particularly the third which is to reproduce the disease in another animal >- who's going to volunteer for THAT? But the article you cite also >describes that the postulated bacteria works differently from anything I suggested that an *updated* version of Koch's postulates would be applied. I stated in my article that all the easy diseases where Koch's postulates apply as they were originally formulated have been found, and that now we're doing the hard ones. Koch's postulates do not apply to HIV infection but yet researchers have managed to work really hard with some really hot epidemiology, good antibody assays, molecular biology techniques, and the like to identify HIV as the cause of AIDS. It wasn't a single technique or observation that clinched the identification either, it was the combination of all the different investigations coming together. I would (humbly) suggest that if this bacterium were to be conclusively demonstrated as the cause of MS a good number of the following would have to occur: 1) a good assay to identify exposure by the presence of antibodies would be developed. 2) If these bacteria can be made visible with some special technique, this should be elaborated and made common and reliable so that several labs can use it routinely. 3) An understanding of what infection with this organism does, and a good solid molecular and/or physiological connection between infection and MS disease processes. 4) A good epidemiological study demonstrating that people with MS are or have been infected and that people without MS have not been infected or have somehow escaped the consequences of infection. 5) Some notion of how this organism is transmitted. In the case of both HIV and H. pylori, not all of these criteria were met, but in each case at least three of them were satisfied. From alt.support.mult-sclerosis Mon Aug 4 11:33:57 1997 From: TOM HOGARTH Date: Sun, 03 Aug 1997 11:30:33 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: Avonex for CPMS? Jeanne-Texas@webtv.net wrote: > ........ Avonex is only approved for RRMS. > Has anyone with CPMS used > Avonex? my opinion as a hard core cp ms advocate ( and all around cool gimp - hot pink, kick-ass wheelchair and an attitude to match). my background is in "ms from the horses mouth" web site as with betaseron, avonex was only tested with rr ms. drug companies are looking for quick approval. rr ms has quantifiable characteristics, cp ms less so. therefore it is not wise for the drug companies to spend the time and money developing a case for cp ms when it can be done faster and cheaper with rr ms. and there is a larger customer base with rr ms. there is no known danger in using betaseron or avonex with cp ms, so some mds cooperate with their patents and do what it takes to get them the meds and the insurance co approval. payment is a major issue with cp ms. i used betaseron from 11/94 till 12/96 with ,i think, positive results. before bs i was not worth two knobs of goat shit. several months into the bs thing i was feeling much better ( no more naps, started taking college courses, started exercising again, even had a brief sexual relationship (that's another story),...). in 12/96 switched to avonex for the convenience etc. after 6 month of avonex i was back to the goat shit routine again so i went back to bs. now starting to feel better. bs is a stronger dosage delivered more often. current status: in june i was at the edge! so i started 4-ap (7/21). will keep a journal and post it later along with more opinions etc. the hell with the fda. doing bs gain. ditto the fda. my fingers are shot, so i'll quit for now tom hogarth thogarth@juno.com ps long time no see ( margret & dawn in dc, cool guys in israel, larry in philly, cathleen in heaven,....) From alt.support.mult-sclerosis Wed Aug 6 20:54:45 1997 From: LaVonne Murphy Date: Wed, 30 Jul 1997 21:20:05 -0700 Newsgroups: alt.support.mult-sclerosis Subject: "Official" Info on Baylor Study Memo from Public Affairs Dept NMSS RE: Misleading Report on ABC-TV News from Baylor College of Mdeicine, on early experimental work in vaccine-like treatment for MS. A report that ran December 19 and 20 via satellite on many ABC-TV news stations and perhaps other media outlets discussed the experimental work of Jingwu Zhang, MD, PhD, at Baylor College of Medicine in Houston, and preliminary results from early testing of a vaccine-like treatment for multiple sclerosis (MS). (This is what was repeated more recently on a slow news day according to the IRC {Information Resource Center} at NMSS.) In the segment Dr. Zhang is quoted as saying, "We know that we can slow down the disease, the disease progress and (in) many patients we see that the disease progress has stopped." Dr. Zhang is one of the many researchers around the world who are investigating ways to stop immune-system cells, called T cells, from causing the destruction of nerve-insulating myelin in MS> Dr. Zhang takes T cells that react against a component of myelin, inactivates the T cells using x-radiation, and injects the inactive T cell into the patients' blood. To date, this highly experimental procedure has been done in only a few people. These studies have been too small to determine whether this approach is useful. According to Zhang, over and above the woman at Baylor, 32 patients have received his vaccine in Belgium but as far as we know no results are published beyond a Lancet study in September '95 with 8 patients which had inconclusive findings. Moreover, with the natural relapsing-remitting course of this lifelong disease, no conclusion about the progress of the trial participants' multiple sclerosis can be made at this time. The National Multiple Sclerosis Society is supporting much research in this area. Although these research approaches are promising, there is a great deal of work yet to be done, and it will be several years before we know whether these vaccine-like treatments are safe and effective against MS. (This memo came from the Dept of Public Affairs in Dec. 1996 and we were refered to it when the last stuff came up this month and we asked for more info.) L -- The Grocery Bag Law The candy bar you planned to eat on the way home from the market is hidden at the bottom of the grocery bag. (comment: especially if it's chocolate!!!) From alt.support.mult-sclerosis Wed Aug 6 20:56:30 1997 From: watkinsksg@aol.com (Michael Watkins) Date: Mon, 04 Aug 1997 21:13:03 +0100 Newsgroups: alt.support.mult-sclerosis Subject: News on Myloral -- Autoimmune Inc. Autoimmune Inc. reported in a press release today that they had "encouraging preliminary results from magnetic resonance imaging have been found for one of the four subsets of patients studied". The treatment groups were divided into male and female and HLA type DR2 positive and negative. It will be interesting to see which group was promising. I believe that the Phase I trial suggested that males who were DR2 negative would benefit from this therapy, so this may be confirmation. From alt.support.mult-sclerosis Mon Aug 11 20:17:19 1997 From: "Laura K." Date: Fri, 8 Aug 1997 10:12:40 -0400 Newsgroups: alt.support.mult-sclerosis Subject: 4-AP response Good Morning Ladies and gentlemen: This little tidbit was just sent to me via e-mail. There was a question recently on my channel regarding this drug. I am writing on behalf of Acorda Therapeutics, Inc. in response to many inquiries we have received regarding an advertisement that appeared in this month's New Mobility. The ad is for "clinical trials" of 4-AP being run by Jack Segal and the 'Casa Colina Centers for Rehabilitation' in Pomona, California. The ad states, among other things, that these trials are being supported by "participant fees." It also states that participants may reside "in any part of the United States" and be "monitored by their primary physician". We believe it is important to inform the SCI community that this advertisement, and the "clinical trials" to which it refers, are in no way associated with Acorda or with Acorda's clinical trials of 4-AP. Acorda's trials are being supported exclusively by Acorda; there are no "participant fees." In addition, Acorda's trials are using Elan Corporation's patented formulation of 4-AP: this is a sustained-release oral formulation that requires only twice a day dosing and gives highly controllable blood levels, as compared to other available formulations. Participants in the Acorda-sponsored trials are being recruited and monitored by leading academic SCI clinical rehabilitation centers, working together to ensure that the trials are done as expertly as possible, and in conformance with all FDA regulations. We hope this information is helpful in avoiding unwarranted concern or confusion which may arise as a result of the above-mentioned advertisement. We would be pleased to answer any additional questions. Please address them to <>. Thanks. Ron Cohen, M.D. Ron Cohen, M.D. Acorda Therapeutics, Inc. 145 West 58th Street, Suite #8J New York, NY 10019 Tel: (212) 376-7553 Fax: (212) 765-8637 E-Mail: acordainc@aol.com regards, Laura K. Founder: irc channel #multiple_sclerosis Channel Schedule: @3:00PM+9:00PM EDT http://www.inx.net/~dgraeme "Who then can so softly bind up the wound of another as he who has felt the same wound himself." 'Thomas Jefferson' From alt.support.mult-sclerosis Wed Aug 13 17:02:46 1997 From: mconti@mindspring.com (Michael Conti) Date: Tue, 12 Aug 1997 08:17:12 -0400 Newsgroups: alt.support.mult-sclerosis Subject: Re: T cell vaccination - Dr. Zhang I've sent two email's and have heard nothing either. There is another MS vaccine currently in Phase I/II Clinical Trials from Connetics Corp. It's a T-Cell receptor vaccine. More information at: http://www.connective.com/ Phase 2/3 will start in Jan 98. M From alt.support.mult-sclerosis Sun Aug 24 19:10:17 1997 From: LaVonne Murphy Date: Sat, 23 Aug 1997 21:50:00 -0700 Newsgroups: alt.support.mult-sclerosis Subject: Re: heat Hi Gang There is a newer article with newer study results and where to call to get info on the cooling suits of different sorts and prices in the newest issue of MS Quarterly. Bet you can't guess what I read today when I was pooping around in the heat of tha day and avoiding moving a lot. Anyhow, you can get it from any NMSS office and get a subscription from Demos Vermande. (I have put their info up here countless times before.) L David G. Baker wrote: > > Maintaining your early morning body temperature (lowest of the day) > and preventing the normal daily increase by taking cool showers, using > wet towels or air conditioning will make you feel better. But, > lowering your temperature 1-2 degrees will make you feel even better. > > The phenomena - that small changes in temperature produce dramtic > changes in symptoms - derives from the fact that symptoms emerge from > comples nerves composed of large populations of axons with all degrees > of demyelination, some partially demyelinated while others totally so. > > As your body temperature rises as it does in the afternoon or with > exercise, there is a conduction blockade of an increasing proportion of > the nerve fibers; signs and symptoms worsen or silent one appear for the > first time. Fortunately, as temperature falls, conduction is restored in > an increasing proportion and symptoms improve or disappear once again. > > The exact electrophysiological mechanism may be a bit more complicated > (than just short-circuited depolaring currents). However, it has been > worked out in great detail in several laboratories during the early 70s > (including that lab. of F. Davis, MD), and work continues today. > > It is interesting that uncovering of the underlying > physiological mechanisms was instrumental in stimulating the discovery of > a family of drugs that have a similar beneficial effect, the potassium > channel drugs like 4-AP, soon to be big business, if approved by the > FDA. > > The idea that you must decrease your body temperature 1-2 degrees to > obtain the full impact is an important one, recognized in 1959 by > C. Wesley Watson, MD in an excellent article in New England J. of Med. > (261:1353-1359, 1959). (This is a classic paper that should be taken > to your neurologist). By decreasing your temperature, you not only > prevent conduction block of those nerve fibers sensitive to any > increase in temperature but also restore conduction in those blocked > at normal temperature and still sensitive to small decreases. > > Sorry, if I get going on this subject; But I feel strongly that "cooling" > is still not well understood nor is it utilized by all. > > Best, db -- Loftus's Law Some people manage by the book, even though they don't know who wrote the book or even what book. From alt.support.mult-sclerosis Mon Aug 25 19:48:58 1997 From: kanb79@aol.com (KANB79) Date: 20 Aug 1997 04:23:19 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: I'm going in for Cytoxan soon my husband just had 6 mos. of cytoxan treatments and it worked great for him. he had a leision in the brain stem that controls the vomiting and naseau as well as other active leisions in his brain. the leision in his brain stem that controls that is gone and there are no active leisions in his brain at all now. From alt.support.mult-sclerosis Sat Aug 30 20:01:34 1997 From: Sharon Brown Date: Wed, 20 Aug 1997 09:33:55 -0500 Newsgroups: alt.support.mult-sclerosis Subject: breathing and ms for everyone's info - timothy vollmer is head of the ms clinic at yale -------------------------------------- ~Date: 8/19/97 6:46 PM To: Timothy Vollmer ~From: SBrown@sbtinfo.com I've done a little bit of research on the effects of m.s. on the pulmonary muscles, but to know avail - i'm sending a copy of all of your requests to my friendly neuro to see what he might say. >From my friend Dawn: "When I say every muscle is affected, obviously I don't >mean every known muscle, :-) but a lot of imp't ones are. And I do have >problems breathing. > > My blood pressure is unstable...and low. I've lost a lot of weight. Like I >already mentioned, I'm having problems with my lungs. I've been getting >infections and having problems breathing. I have asthma.I may not be on >oxygen but I'm heading there. I've been on becloforte. I'm also pretty much >confined to a hospital bed which is no picnic. I'm blind in my >left eye and 50% vision in right. I have tremors and severe spasms. >I am incontinent with the bladder and semi-continent with the bowel. >Because I'm a quadriplegic, I use a pointer to type which isn't easy >because I have a hard time keeping my head up. My head and neck >muscles are weak. I'm getting voice recognition. Every time I eat, drink, or take medication, I feel like I'm going to choke to death. >From my friend Judy: I saw your posting today and need some help. I recently >had pulmonary function tests done, and the only test on which I did poorly >was the one that tests the strength of the muscles used for breathing. >However, my neurologist insists this has nothing to do with the MS, and that >he's never had a patient with MS who has trouble with this. Do you know >anywhere I can get more info on this? I'm going to ask Dawn also...Thanks, >Judy Morgan Reply to: RE>breathing and ms Your note brings up two issues related to breathing in patients with MS. The major issue in the first paragraph appears to be difficulty with swallowing with a symptom called dysphagia. This is common in MS, particularly in patients with more severe disability. It is due to loss of neurologic control over the muscles in the throat (the first third of the esophagus is voluntary muscle, which is vulnerable in MS). Besides choking, this leads to the freguent aspiration of food, saliva, etc., into the lungs which leads to low level infections and intermittent full-blown pneumonias. Such a problem needs careful medical managment including physiatry or ENT consults in many cases. The second paragraph may refer to a problem where MS affects the function of the intercostal muscles which lead to insufficient expansion of the lungs. This can occur when MS weakness affects the trunk muscles and sometimes from spasticity in the chest muscles. Rarely the diaphragm may be affected when the phrenic nerve is damaged by MS where it enters the spinal cord. Both can be evaluated by pulmonologist. I hope this is of help. Tim Vollmer, M.D. - Sharon From alt.support.mult-sclerosis Thu Sep 11 10:41:05 1997 From: rmmiller@sure.net Date: Wed, 10 Sep 1997 10:11:32 -0600 Newsgroups: alt.support.mult-sclerosis Subject: multiple sclerosis and mitoxantrone Dear MS patient; There is but a single medicine that can actually give improvement in your EDSS(physical condition. This medicine, mitoxantrone, is approved by the US FDA as Novantrone.There are reports in the Medline from Germany, France and Italy. I can provide you with a bibliography if needed. The medicine was approved for cancer but MS dose is 1/4 that level, and there is minimal risk,and that seems to be nausea,which can be dealt with. I am planning to have the treatment, probably in October 1997, with an oncologist in Fountain Valley, CA. If you are interested in having the treatment,finding a doctor to administer it is the hard part. I have solved that, by finding the local doctor. He will require a blood test, an EKG, and a brief exam before treating you. We can share the medicine cost, which is about $650/vial, and can treat seven or eight people. Ask your questions,let me know if you are desirous of taking this medicine. Bob Miller -------------------==== Posted via Deja News ====----------------------- http://www.dejanews.com/ Search, Read, Post to Usenet From alt.support.mult-sclerosis Thu Sep 11 17:38:56 1997 From: Arto Kalevi Mikael Eskelinen Date: 11 Sep 1997 08:43:16 +0300 Newsgroups: alt.support.mult-sclerosis Subject: The summer is finally over... We had the hottest summer in this century in this country (Finland). And all of my MS-sx got from bad to worse with the high temperature. Balance problems made me to use a cane in walking inside my house. And outside the house I had to use a walker. At 13.30 -14.00 I was HIT by fatigue every day. With fatigue came usually a very bad brain fog and I could not concentrate in anything, not even the TV. (and tv-shows are oriented for persons in the intellectual level of a 8 year old kid...). But now (sept. 11) we have had the cool weather, rain and wind (this used to be the normal in summertime Finland.) for a week. The cool weather has givmn me a very strong recovery in just a week! Most of my Sx are getting back to normal (from worse to bad). No need for a cane or a walker anymore. Fatigue and brain fog are almost gone. Even the fingers of my left hand are doing their share in typing and typos. I dont like the autumn. I love it! ae in Jyvaskyla, Finland. -- ;; Arto Eskelinen @Univ of Jyvaskyla, Finland (aeskelin@cc.jyu.fi). "But what can I do? I am just one...(counting)...one man! --Homer J. Simpson From alt.support.mult-sclerosis Sun Sep 14 12:20:10 1997 From: ALXJ60A@prodigy.com (Bruce Weiner) Date: 13 Sep 1997 21:20:49 GMT Newsgroups: alt.support.mult-sclerosis Subject: AVONEX,METHOTREXATE,COPAXONE I'VE BEEN ON THE FIRST TWO DRUGS FOR ABOUT 6 MONTHS NOW, AND HAVE JUST RECEIVED THE DOCTOR'S OK TO START ON THE THIRD ONE. DOES ANYONE HAVE EITHER ANY THOUGHTS OR EXPERIENCE REGARDING THIS COMBINATION? THANKS, BRUCE