From alt.support.mult-sclerosis Wed Jan 1 14:14:37 1997 From: hwright@tpgi.com.au (Howard Wright) Date: 31 Dec 1996 01:27:01 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Imuran and/or methotexate experiences Status: O X-Status: I'm sorry about the delay with this response. I have been having a bout of DMS (dead modem syndrome), which has kept me off the net for a while. I have been using methotrexate for a bit over 6 months, first at 5mg per week and then at 7.5mg per week. I have not noticed any effect at all, good or bad. I certainly haven't had any unpleasant side effects. Unfortunately there hasn't been any beneficial effect either. I am continuing to go downhill. My specialist tells me that it may be as long as 12 months before I can tell whether there is any benefit. There are a couple of no-nos if you do take methotrexate. They are: 1. Avoid too much alcohol. I limit myself to two glasses of wine per day and have not had any problems. Too much booze and methotrexate means no liver. 2. Avoid aspirin. The combination of aspirin and methotrexate can intefere with blood platelet function and can increase the risk of bleeding. If you need a pain killer take paracetamol 3. Avoid co-trimoxazole based antibiotics (Bactrim, Septrim etc. These are the average GPs first response to UTIs) These antibiotics work by inhibiting folate uptake as does methotrexate. The combination can be too much. I have been having regular blood counts and liver enzyme tests. All have been OK so far. Methotrexate has been used for several years for severe cases of rheumatoid arthritis. You may find some information on the RA newsgroup or websites. Regards, Howard. From alt.support.mult-sclerosis Tue Jan 7 15:41:10 1997 From: ewoldt@omnifest.uwm.edu (Elizabeth Ann Woldt) Date: 6 Jan 1997 09:06:29 -0600 Newsgroups: alt.support.mult-sclerosis Subject: Re: betaseron experiences Status: O X-Status: Joan, I don't know if you got my experience? What exactly do you want to know? I've been on Beta for almost 3 years. At first, got the "usual" side-effects: aches and headache the day after the injection, relieved by takingt Tylenol at the time of injection, then about 4 hours later. These, for the most part, went away after 2-3 months. I say "for the most part", because I do experience that again, now, if I'm really tired when I inject, or am otherwise not feeling well, like last month whe I had the flu. Also notice the headache if I inject during my menstrual cycle, but I'm not sure if it's because of the Beta, or because of the cycle.... Now, 3 years later, I've had only one minor exacerbation; my MRI shows definite improvement in numbers of new placques (much fewer). I had a n MRI done when I started, and another about 6 months ago. Remember, Beta isn't supposed to take away or reduce any current disability; only to stop the level and intensity of exacerbations. I believe it has done that. Ann From alt.support.mult-sclerosis Wed Jan 8 17:26:12 1997 From: longri@asterix.helix.net (Richard Long) Date: Tue, 07 Jan 1997 07:03:36 GMT Newsgroups: alt.support.mult-sclerosis Subject: The Lowdown on Cladribine Status: O X-Status: (forwarded from Jackie Ferguson) My MS was progressing in a "lurch" when I heard about cladribine. The more I read, the more enthusiastic I became. Plus, I talked with a young lady who had taken clad., and encouraged me to take it because I WAS progressing! I took the clad. from Aug. '95 to Feb '96. It was given intravenously (about l hour) in my doctors office (my doc's subspecialty is oncology) ... and they almost always administer the drug, because it is FDA approved for hairy cell leukemia, etc.--- NOT FDA APPROVED FOR MS --- oncologists have the most experience with it. I took it Mon through Fri, one week/mo for 6 months. For a total of 30 doses. Side effects? There were no obnoxious ones that I could discern ... no loss of hair, no nausea, vomiting or diarrhea or headaches. I felt fine throughout. Make no mistake: It is a high powered drug ... and potentially could immunosuppress you so completely that it could be fatal. That's why the oncologist monitors your blood very carefully ... in my case, he delayed treatment on a few occasions ... even so, I developed "profound neutropenia" (neutrophils -- type of disease fighting white blood cell -- fell <500. So I stayed at home ... avoided company, and followed other instructions of my doctor (was even put on an antibiotic prophyllactically). But nothing bad happened (that's why I can tell you about it!). I noticed my MS started to stabilize after 2-3 months. I then began a course of intensive physical therapy ... was taught how to walk again --- imagine!!! I continue exercising daily. Try to do 1 hour at least. Most recently I have been working on Tai Chi for my non-existent balance (what's that?). I reserve judgement on Tai Chi ... I still need bilateral support for balance. At least it's been ages since I fell. My quality of life? I'm driving my car again ... short distances to my hairdressers, Dr's. offices and now, department stores! (Thanks for hand controls, Amigo's & Lifts, and a very supportive husband! I walk around the house either "solo", using a cane or a 4 wheeled walker. I walk outside for short distances ,,, walking a block is even "pushing" it. Clad is expensive @$500.00/dose and most insurers won't pay for it. Multicenter trials should be ending soon. I really think the results will be good and FDA approval should follow. Just wanted to say it like it is. Having MS is no fairy tale, and the treatments can have nightmarish consequences. I am happy that I took the clad... but each of you who is considering it, has to really think about it. Risk versus benefit. Something really good could happen, and something very very also. I'd love to hear from each of you what you decide? I don't get to the MS group as often as I'd like. I do check my email almost daily (below). I posted this group in particular because you expressed an interest in clad. Jackie Ferguson. RN, MS2 jackferg@worldnet.att.net --------------------------------------------------------------- REPOST -- due to FAQ Subject: Re: Cladribine Date: Fri, 22 Nov 96 17:45:06 +0000 From: Jackie Ferguson RE: Getting Information on Cladribine:- 1, Contact your local chapter and the NMSS, ask for the Information Resource Center. The number of National is:1-800-fightms. They can also give you the phone number of your local chapter. 2. Go to the source! Cladribine (AKA as Leustatin and 2CdA [2-chloro-deoxyadenosine]), is manufactured by Ortho Bio Tech, Inc., pharmaceuticals. They will provide a wealth of information. I recently called and received a packet of info on clad., including a summary of studies 1&2, a copy of the Lancet artical "Cladribine in the Treatment of CPMS", July 2, 1994, package insert of the drug itself, and a voluminous number of articals in a large envelope, "information yourequested" ... includes press releases from the NMSS, several scientific and Medical Professional articals (because I requested it). If weight is a measure of the quantity of info. sent, first class postage was $3.00. Can assure you the information was top quality and specific to my questions. I spoke to Katherine Hsu, R.Ph., "Drug Information Specialist, Clinical Affairs". She called back promptly, when I left a message in her mail box. Write or call to: Ortho Bio Tech., 700 U.S. Highway 202, PO Box 670, Raritan, NJ 08869-0670 or call 800-325-7504 or 908-704-5311. All the best to my MS compatriots. Jackie Ferguson, RN, MS2 jackferg@worldnet.att.net PS I'd love to hear from each and every one of you ... this is a tough,hard decision ... do what's best for *you* ("To thine own self be true" Regards, Richard Long Burnaby, B.C. Canada Where it's probably raining.It usually is. From alt.support.mult-sclerosis Fri Jan 17 17:57:54 1997 From: LaVonne Murphy Date: Thu, 16 Jan 1997 00:46:43 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Re: Phase I/II study of vaccine for MS Status: O X-Status: jack dalton wrote: > > I just happened to find this article on "Business Wire" which states > that Connective Therapeutics, Inc(NASDAQ:CNCT) announced on 9 Jan 97 > that it had initiated a multicenter Phase I/II clinical study of its > therapeutic vacinne for multiple sclerosis. > > It will be a double-blind, placebo-controlled study involving about 100 > progressive multiple sclerosis patients. > > They hope to confirm positive results (6 out of 6) from the pilot > study. The results were published in the journal "Nature Medicine" Oct > 96. No adverse effects were attributable to the treatment. > > I really hope this is as good as it sounds. I see no NIH of NMSS > involvement. I hope someone can validate this company and their study. > > I have a mild case of RR MS and I am taking Avonex. I regard it as a > delaying tactic and feel something like this is what is desired/needed. > Additional comments and info is requested. Jack Dr Shapiro talked of this study at our Annual Meeting a couple of months ago. NMSS has indeed put some money into this study being done in Portland, Or. Many of us hope this vaccine helps those with progressive MS because there is nothing but Sx control to assist them so far. Berlex and Biogen are also testing their products for progressives I beleive. Berlex has had the test underway for about a year and we should be hearing some results in about another year. The vaccine, if it proves effective, will not be tested completely for at least another 4 to 5 years. After the Phase II test there must be a Phase III with many folks in the study (like 300-500). After each phase the data must be put together and analyzed. Remember that all participants are not started on the same date. They are started as soon as a certain (determined by the protocol) number are found and then others added to the test so that sometimes the test takes more than a year and a half or two years before data comparison can be completed. God knows that the folks who are progressive need some intervention worse than you and I do. Yet it is easier to study and test folks who are RR and less risky. So here we are. We have stuff available to try and those with the most need do not ... yet. But Cladribine looks close though it is not effective for all either. L From alt.support.mult-sclerosis Fri Jan 17 17:59:12 1997 From: coker@airmail.net (STramp) Date: 16 Jan 1997 03:14:48 GMT Newsgroups: alt.support.mult-sclerosis Subject: Interesting Info on how Beta Interferon works Status: O X-Status: Pardon posting this twice, but my first subject looked like I was asking a question, not answering one... I found the following passage in a wonderful mass market science book titled "The Edge of the Unknown: 101 Things you don't know about Science and no one else does either" by James Trefil. Great book, can't say enough good things about it. On of the chapters is the question "Why Doesn't Your Immune System Attack Your Own Cells?" It goes into MS and what it does with a good description of how the beta interferon drugs (Betaseron and Avonex) work. There is also some info on forthcoming research. I know when my wife first started taking Avonex we both wanted to know what it was doing. We found this information very enlightening and helpful. I hope everyone else feels the same. Sorry about any copywrite violations, but I'm sure the people at Houghton Mifflin are cool. If not, well, sorry guys. (Everyone should buy the book anyway, it is really great) I quote directly from the book from here on. "The Immune System is designed to protect us from all manner of foreign invaders. To do its job, it produces a wide variety of cells, the most important being B and T cells (the letters stand for bone marrow and thymus, respectively, where the cells are made). These cells have structures called receptors on their outer surfaces that act as keys that fit locks on molucules of invading organisms. It is this molecular recognition that is the central event in the immune response. Under normal circumstances, every cell in the body sports bits of protein on its surface, carried there by other specialized molecules. These displayed proteins play the same role in the body as a password does in the military. Passing T cells sense these proteins and leave the cell alone. We say the T cell ³recognizes self.² Autoimmune diseases like multiple sclerosis and rheumatoid arthritis occur when something goes wrong with the password recognition system and the immune system starts to attack healthy tissue. One of the great problems in immunology has been to understand exactly how the immune system recognizes self -- why it will attack cells in a transplanted liver, for example, but leave the patientıs own liver alone. The immune system generates billions of different receptors, and the immune response is triggerd when one of them fits an invader molecule. This diversity of molecular keys is produced by a basically random mixing of bits of protein, so it is extremely unlikely that your immune system would produce no T cells that could attack your cells. However, the system tests the T cells before they are released from the thymus into the body. Because the thymus is replete with self cells, any T cell that sports a key for your cellıs lock will inevitably bind to a nearby cell. If this happens, the T cell stops growing and eventually dies. Thus the only mature T cells that emerge from the thymus are those that do not react with self cells. We do not know in detail why T and B cells that have been selected for their ability to ignore self cells suddenly start to attack them. One popular theory is that viruses trying to gain entry present to the immune system molecules that mimic those of the hostıs body. This process could prime the system to attack any cells bearing similar molecules, even self cells. As is so often the case in modern medicine, dealing with autoimmune diseases requires a detailed understanding of what is happening at the molecular level. In Multiple Sclerosis, for example, B and T cells attack the sheathing that surrounds nerve cells in the brain and spinal cord. First one set of molecules on the membranes of T cells sticks to corresponding molecules in the walls of blood vessels, triggering the production of proteins that create a small hole in the vessel wall. This allows the T cells to get through the vessel wall and into the brain. There they encounter triggering molecules on the surface of nerve cells and innitiate the immune response. The net effect is that the other cells from the immune system, as well as the T cells themselves, cooperate to destroy the sheathing around major nerve cells. Understanding the basic process involved in MS as the molecular level has allowed scientists to begin to develope a multipronged attack on the disease. The basic idea is to take each step in the chain of events outlined above and find a molecule that will block it. One technique is to use drugs that block the processes that bring bits of protein to the surface of the nerve cells. In fact, the first approved therapy for MS (in 1993) involved the use of a drug called beta interferon, which prevents production of the molecules that carry the proteins. Without the carriers, there are no proteins for the T cell to recognize on the cell surface, and the disease is blocked. Other strategies, now under development, would block the disease process at other points. For example, scientists are working to develope decoy molecules that would lock to the molecules that normally bring proteins to the cell surface, preventing those molecules from displaying self proteins that would trigger T cells. Another strategy involves finding molecules that will prevent T Cells from sticking to the walls of blood vessels by making molecules that occupy the ³sticky spots² on the T Cells or on the vessel walls. Think of this strategy as covering up Velcro patches on the T cell or the blood vessel -- patches that would otherwise stick to each other. Finally, we can try to develop antibodies that will attack some of the molecules that actually damage the nerve sheathing. This long list of possibilities illustrates the way medicine is likely to proceed in the future. First we will understand the basic molecular workings of the disease process, then find molecular strategies for blocking it. Iıve concentrated on MS here, but I expect to see this strategy adopted across the board in the future." From alt.support.mult-sclerosis Sat Jan 18 11:34:58 1997 From: LaVonne Murphy Date: Thu, 16 Jan 1997 20:45:21 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Re: Alpha interferon Status: O X-Status: Bettyest wrote: > > Does anyone uses Inferon "n" (Alpha Interferon) for m.s. can anyone send > me some information? Hi Gang I have seen several posts on Interferon Alpha lately so went on an information scavenger hunt. You may want to print this out and read it with your dictionary close by. That's your part of the information hunt. There are four types of Interferon Alpha on the market and it is not the same drug as Interferon Beta (two forms). Alpha has been proven effective on Hairy Cell Leukemia, AIDS-related Kaposi's Sarcoma (sarcoma is another form of cancer), Genital and Anal Warts and Chronic Viral Hepatitis. It is classified as immunomodulator; antieoplastic; antiviral; orphan drug. Actions: "...Has a broad spectrum of antiviral, cytoxic, and immuno-modulating activiey (i.e., favorably adjusts immune system to better combat foreign invasion of antigens and viruses). Antiviral action: reprograms virus-infected cells to inhibit various stages of virus replication. Antitumor action:... Immunomodulating action: enhances phagocytic activity of macrophages and augments specific cytotoxicity of lymphocytes for tartet cells. IFN is species specific but not virus specific; it partially inhibits viral replication and is immediately produced at site of viral entry by any cell; thus, the immune system and interferon system of defense are complementary." It is another injectable. There is no recommended dose for MS in the book, called _Nurses Drug Guide 1997_, for MS. Also I could only find two of the four types listed. This could be because only the two are FDA approved in the US, but I don't know that for sure. Side effects are many. Blood has to be watched carefully and liver studies are frequently required (also blood work). There seem to be an overabundance of GI side effects; nausea, vomiting, diarrhea, etc. I am going to quote again for the CNS side effects because they run right along side MS Sx. "Adverse side effects/CNS: depression, nervousness, anxiety, confusion, dizziness, fatigue, somnolence, insomnia, altered mental states, ataxia, tremor, paresthesias, headache." I would ask your MD what this drug might do for you. It's action seems to be basically antiviral and antitumor (but selective). I would guess that it's action may be somewhat like Cladribine because of the hairy cell leukemia connection but that is only an assumption. L *********************************************************** "Either we have hope within us or we don't; it is a dimension of the soul, and it's not essentially dependant on some particular observation of the world or estimate of the situation. Hope is not prognostication. It is an orientation of the spirit, an orientation of the heart; it transcends the world that is immediately experienced, and is anchored somewhere beyond its horizons..." Vaclav Havel From alt.support.mult-sclerosis Tue Jan 21 14:14:20 1997 From: gells@ultranet.com (Doug Geller) Date: 19 Jan 1997 22:51:23 GMT Newsgroups: alt.support.mult-sclerosis Subject: Off of Avonex Status: O X-Status: After 6 months of once-a-week playing doctor and self administering Avonex the verdict is in. I've been progressing at least as fast as I was prior to starting Avonex. And the use of Avonex might have sped up the progression a hair... who knows. I know I was off the day of/day after drug administration. I know I can't do simple things anymore like getting my butt off the toilet after a dump. I used to have no problem with that. Even standing long enough to get my pants up has become a problem. At least my concern with needles is as thing of the past. Subcutaneous vs IM... who cares?? A half-inch needle versus an inch and half needle?? Who cares?? They're both cake. Exeedingly simple. Like a game of darts. Painless and inconsequential. It's the MS that's scaring me now. Time for Copaxane I guess. My neuro's scared of Cladribine. _/_/_/ _/_/_/_/ _/ _/ _/_/_/ _/ _/ _/ _/ _/ _/ _/_/_/ _/_/_/ _/ _/ _/_/_/ _/ _/ _/ _/ _/ _/ _/_/_/ _/_/_/_/ _/_/_/_/ _/_/_/_/ _/_/_/ Doug Geller gells@ultranet.com From alt.support.mult-sclerosis Sun Jan 26 18:22:21 1997 From: LaVonne Murphy Date: Fri, 24 Jan 1997 21:40:18 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Avonex news Status: O X-Status: Hi Gang Had a chance to talk to the rep for Avonex from Biogen today. Asked about antibodies to Avonex. He said there will be a paper presented in April at some big meeting for neuros. The study has, so far, shown that people do develop antibodies to Avonex, about 20% as compared to the 30% taking BetaSeron. They do not know why the difference yet. Also the study has proven that even if antibodies develop to Avonex, the drug is still effective. They don't know why this is either but one of our favorite neuros here said that it's probably because the Avonex is closer to the interferon beta that our bodies produces that is the BetaSeron. Understand that the last sentence is an educated guess and not fact - yet. Now some other good news for those having problems with being underinsured and/or having large co-pays for Avonex. Call the customer information line number (1-800-465-2255) which is open M-F 8:30 am to 8:00 pm Eastern Time. Ask for Nova Factor. Your call will be forwarded and Biogen will pay for the call to Nova Factor. Explain your situation and they may assist you, depends on your need. I do not know if Nova Factor will find financing for someone who has NO insurance for medications. This place apparently, from what I could pick up from the part of the conversation I heard (came in in the middle, sorry), finds sources of financing from different people and companies to pick up some of the $ for the underinsured. Hope this is of help to some of you who have had to make the decision not to use Avonex because of finances. L _______________________________________________________ Not one of us knows what effect his life produces, and what he gives to others; that is hidden from us and must remain so, though we are often allowed to see some little fraction of it, so that we may not lose courage. Albert Schweitzer From alt.support.mult-sclerosis Sun Jan 26 18:24:22 1997 From: LaVonne Murphy Date: Fri, 24 Jan 1997 21:58:57 -0800 Newsgroups: alt.support.mult-sclerosis Subject: Myelin Transplant Study Status: O X-Status: Hi Gang Please understand that this study is in the very early stages and, *if it works*, will not be available to the general bunch of us for several years!!! Any spelling errors are mine. This memo comes from the Research and Medical Programs Dept. of the NMSS. "News About Transplants to Replace Missing Myelin" "INFORMATION The January 1997 issue of _Nature Medicine_ contains a paper on the research of National Multiple Sclerosis Society grantee Ian Dumcan, PhD(University of Wisconsin-Madison) and colleagues, describing success in inducing new myelin to grow in the spinal cords of genetically mutant, seriously debilitated laboratory animals whose bodies are incapable of making normal myelin. Myelin is the insulating material on nerve fibers which is destroyed by the immune system in multiple sclerosis (MS). One goal of MS research is to find ways to replace lost myelin to improve nerve function in people with the disease. These experiments involved injecting immature myelin-making cells (oligodendrocytes) into areas of the spinal cords of a small number of the mutant animals. The transplanted cells manufactured myelin and wrapped it aroung nerve fibers both in the vicinity of the transplant sites and farther away from the sites. In spite of the new myelin growth, the animals experienced no clinical improvement. These preliminary experiments add to evidence in animal models suggesting transplanted myelin cells may be useful in the future for treating humans with multiple sclerosis, if the immune attack underlying the disease can be stopped and the many complications of this invasive procedure can be resolved. Other research approaches include stimulating natural myelin repair processes. The national Multiple Scoerosis Society supports many research projects in these areas to advance the goal of repairing myelin and restoring function in people with multiple sclerosis." -------------------------- _____________L__________________________________________ Not one of us knows what effect his life produces, and what he gives to others; that is hidden from us and must remain so, though we are often allowed to see some little fraction of it, so that we may not lose courage. Albert Schweitzer From alt.support.mult-sclerosis Thu Jan 30 16:16:38 1997 From: dxe@cassidy.sbi.com (Dan Ellsweig (Enterprise Management)) Date: 29 Jan 1997 12:00:40 GMT Newsgroups: alt.support.mult-sclerosis Subject: Re: Beta for Chron Prog? Status: O X-Status: In article <5cirip$3ut@omnifest.uwm.edu>, cpbeck@omnifest.uwm.edu (Constance P. Beck) writes: |> Ann, |> |> Thanks so much for sharing your experience with betaseron. I still don't know |> how to make this decision, especially after reading the comments from Lyndsy |> in Madison about three mser's who are no longer walking after trying beta or |> avonex..... |> |> Well, it figures that not only do we have to deal with the uncertainties of |> our ms, but the vagaries of various therapies. My, this is a challenging |> experience! |> |> Constance Greetings I have some personal experience with betaseron and CPMS. My wifes neuro got her in the program early on as she was still ambulitory. We followed the betaseron regimin for a year and a half. The MS continued to progress and there was no indication that the betaseron was effecting the progression of the disease. Personally, it is not worth the cost or the effort. Dan -- ****************************************************************************** Dan Ellsweig ** Salomon Inc. ** dellsweig@sbi.com ** Route 3 Rutherford, N.J. ** (201) 896-6162 ** Enterprise Management ** (800) 800-7759 PIN 221370 ****************************************************************************** From alt.support.mult-sclerosis Sun Feb 2 14:01:12 1997 From: "Kathy G." Date: Thu, 30 Jan 1997 12:49:57 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: 4AP Status: RO X-Status: In a message dated 97-01-30 02:04:36 EST, cattails@FLASH.NET (Ann Manasreh) writes: << Sorry, I can't find the thread about 4AP. Someone wrote in about a time released formula that was obtained from an Atlanta MS center. Could you please re-post or e-mail the info to me? My neuro has asked for a copy of the message. >> Hi Ann, I am the one who is taking 4AP. It is supplied by the Shepherd Center Apothecary in Atlanta, Georgia (phone 404-350-7743). The purpose of 4AP (4-aminopyridine) is to increase conduction of neural signals in the brain. I have found that it helps greatly with my locomotion and fatigue. The pills are formulated in 10mg time-release capsules taken twice a day. According to my neurolist the FDA is still testing this drug, but it should be approved in the next three years. Shepherd Center has over 1300 ms patients. Please note that this is now an orphan drug so it is not covered under insurance. It costs aprox. $800 per yr. You can get more specifics on the drug through the NMSS. I have been taking this medication for over two years with excellent results. There have been some serious side effects with the medication but I haven't had a problem. I would suggest that your doctor consult one of the neurologists at the ms center at Shepherd to find out more about their success with this drug. Good luck, Kathy G. From alt.support.mult-sclerosis Tue Feb 4 16:15:53 1997 From: ahalko@cc.helsinki.fi (Aapo Halko) Date: 3 Feb 1997 16:46:23 +0200 Newsgroups: alt.support.mult-sclerosis Subject: Re: Trauma - Experiences / information request Status: RO X-Status: When I was five years old (1968) I fell from the upper bed on my head. The drop was 150cm. I was two weeks in hospital after that. When I was 15 (1979) I experienced my first ms symptoms: numbness in hands and legs. I had a lesion in the spinal chord. These symptoms subsided in three months. In 1986 I had Uhthoff's symptom, a gray area in the vision during exercise. In 1990 left arm and leg started to get spastic progressively. From 1993 also my right side started the same progression. Again these symptoms are caused by a lesion in the spinal chord. I have always been heat sensitive. I have had no problems with my bladder. I have no relatives with ms. My guess is that the trauma made a 'hole' for ms to get in. Without it I could be healthy. -- Aapo Halko * |_ http://www.helsinki.fi/~ahalko/ms.html * ___ O o A www page that collects MS links on the Internet.* From alt.support.mult-sclerosis Wed Feb 5 10:14:03 1997 From: Mike LaFrance Date: Sun, 2 Feb 1997 20:10:12 -0800 Newsgroups: alt.support.mult-sclerosis Subject: MS Crossroads Makes Consumer Reports Status: RO X-Status: Congratulations Aapo Halko! Just reading Feb 1997 Consumer Reports article on finding medical help online. I will quote directly "Conversely, some of the best sites we found were maintained by private individuals. We found links to a wealth of useful material on multiple sclerosis-help with daily life, news on experimental drugs and treatment, clear lay language descriptions-on MS Crossroads (http://www.helsinki.fi/~ahalko/ms.html), a site run by a Finnish mathematician with MS." Does being published in an American consumers' magazine help with tenure? Dawn LaFrance From alt.support.mult-sclerosis Wed Feb 12 18:52:56 1997 From: Gerry Gold Date: Mon, 10 Feb 1997 16:48:39 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: MS support group Status: RO X-Status: Carol -- I am 51 end have lost the ability to walk and freely use my fingers. But I still teach and enjoy doing it together with publishing and going to meetings. Guess I would rather enjoy life as long as it's available! Jerry Gerald Gold Department of Anthropology York University, North York, Ontario M3J 1K3 CANADA tel. 416 736 2100 [Th. 11-3:00 except for a lunch break] res. 416-225-8760 [early evening only] Dictated entirely with IBM VoiceType Dictation under OS/2 From alt.support.mult-sclerosis Tue Feb 25 15:16:28 1997 From: Gerry Gold Date: Fri, 21 Feb 1997 14:31:48 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: greetings from internet newby Status: RO X-Status: continuing work... With MS 1. 11 years ago our chair recommended that I accept long term disability and stop teaching. My decision then and now is that I will stop when I am ready. 2. The implicit and explicit understanding of my colleagues is that I am here to work but that there are some things which I had better not do... 3. I get a great deal of satisfaction from my work and I have concluded that no other arrangement would be as satisfactory. In 1988 I was working with MS although it was largely invisible. In 1996, working with MS, I use a wheelchair and other assistive devices but this has not caused any problems with my colleagues or with students. .... Perhaps because it happened over an extended period of time and because attitudes toward disability have changed. Good luck Carolyn!/Gerry Gerald Gold Department of Anthropology York University, North York, Ontario M3J 1K3 CANADA tel. 416 736 2100 [Th. 11-3:00 except for a lunch break] res. 416-225-8760 [early evening only] Dictated entirely with IBM VoiceType Dictation under OS/2 From alt.support.mult-sclerosis Thu Mar 20 16:22:31 1997 From: Wayne Longman Date: Tue, 11 Mar 1997 13:51:46 UT Newsgroups: alt.support.mult-sclerosis Subject: Re: Methotrexate Status: RO X-Status: ssnip>My husband has just started treatment for his CPMS with Methx. Has >anyone had any *good* results using Methotrexate? snip Hi I took Methotrexate for nearly a year I had developed weakness in my arms as well as weakness in my left leg. I was told that Methotrexate did not help on problems below the waist but was sometime effective for arm troubles. I was very happy with the drug. I had only minor side effects. I took 10mg once a week. On what I referred to as "my poison day" I tended to be a bit nauseous and achey. I had blood studies done on a regular basis - all results were normal. My hair did not fall out or, as more common, become thinner. I lived in Canada when I was on Methotrexate When I moved to the US the new neuro was reluctant to order methotrxate because he was unfamiliar with the drug. He referred me to a rheumatologist to supervise the drug for me. I stopped taking the drug only because it was necessary to be accepted on a Betaseron clinical trial. I had a signiificant improvement in arm strength and I did not experience any facial numbness whiole I was on the drug. Facial numbness is a problem of mine. Not painful but really annoying. So far no facial pain. My arm streength has not deteriorated to the extent it was before I went on Methotrexate Anna Longman From alt.support.mult-sclerosis Thu Mar 20 16:24:52 1997 From: Jackie Ferguson Date: Mon, 10 Mar 1997 18:37:08 -0500 Newsgroups: alt.support.mult-sclerosis Subject: Re: Cladribine Trial Results in NJ Status: RO X-Status: Arlene Horowitz wrote: LaVonne Murphy wrote: Jackie Ferguson wrote: I'm sending this post to the group to share my experience of taking Cladribine from August 1995 to February 1996 (done intermittently for a total of 30 doses). My neurologist ordered the cladribine because I was showing steady progression. Around the 3rd month into Rx my MS seemed to stabilize. At about that time I began P.T., for a backache. We worked on my gait, because my body mechanics was all eschew. I continue to exercise ... About an hour most days. I exercise against resistance (use weights, etc.), stretching exercises are among my favorite. Now, I'm on a self imposed high protein diet ... (why? It's good muscle food). Before, I could hardly walk ... I mean I had "graduated" to using a scooter in the house. Now I'm ambulatory at home, and when I go out I'm able to walk short distances using bilateral support (4-wheeled walker or 2 canes). I'm driving again, and have the gratification of the independence that goes with it. I'm doing better than I've done in the past 5 years. I mean practical strangers will come over to me and comment on this. In short, I feel good, luck good .... and this is an obvious reality. Needless to say, emotionally I'm right up there. I guess I'm making a few points: 1. The cladribine appeared to stabilize my MS (annecdotal report). 2. P.T. and a daily routine of regimented exercise has been a powerful adjunct to the cladribine. 3. I honestly believe that my high protein diet (over 100 Gms/day) has been a tremendous building block as I improve my musculature. I needed to share this with you. (I too am disappointed about the results of the clad. study). Jackie Ferguson