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Subject: MS From: GUEST,Celtic Soul Date: 13 Nov 01 - 08:51 AM MS was brought up in the PMS thread, and I thought it might deserve it's own. My Uncle has MS. When it hit him, my Mom made the rounds in the family to let everyone know, and to see if anyone had any suggestions. I remembered at the time having seen many years before a show on alternative treatments. It was on a show like "20/20", so I thought it must at least have some validity. They usually check stuff out so that they can de-bunk myth (and not get caught with their pants down). In any case, it showed a Doctor in Maryland (If I remember correctly, the Doc would have been somewhere in the Frederick area) who used bee stings as a method of helping MS patients with their symptoms. There was one documented case of a woman who had been seen by many many Physycians to that time, who was wheelshair ridden, and who could no longer speak. However, after bee sting therapy, she was walking with a cane, and very talkative for the interview with the newscasters. Again, it has been a looooong time since I saw the show, but after a really quick internet search, I found this: http://www.dancingbeeacres.com/beevenom.html This is a snippet from that page: "Charles Mraz, a well know beekeeper and Apitherapist has been treating various ailments and disease using bee sting therapy for the past 60 years (Before his death in 1999). In the past decade he had also treated patients with multiple sclerosis. A patient named Pat Wagner was diagnosed in 1970 with multiple sclerosis. Throughout the years she tried different kinds of medications and was hospitalized several times. In February of 1992, she was informed by her doctor that the medications were no longer effective in improving her condition. She had no hope in ever getting out of a wheelchair. Soon after, as a last resort she started using bee sting therapy and IT WORKED! Now she treats other MS patients with bee stings in her home. We know from reports that more than 3000 MS patients have partly or fully recovered after receiving bee venom therapy." This may be the very woman I saw interviewed on the 20/20 type show back in the mid nineties. I have not had enough time to actually go over this site in it's entirety, I apologize. But maybe just maybe it will contain something that will help! :D As a sufferer of many ailments for which the medical community also throws up it's hands and leaves us to our own, I sympathise. I deal with CFID's and PMS in spades. I swear by alternative approaches, as the general medical community has been of little to no help. It can't hurt to look, and might even be the avenue you're looking for. |
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Subject: RE: BS: MS From: kendall Date: 13 Nov 01 - 08:58 AM Those so called, "Alternative approaches" were around long before modern pill pushing doctors. |
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Subject: RE: BS: MS From: Allan C. Date: 13 Nov 01 - 10:00 AM Most informed and enlightened physicians are in favor of whatever brings positive results in the treatment of illness. They are intelligent enough to realize that there is far more to medicine than the treatments recommended by the AMA. |
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Subject: RE: BS: MS From: bernil Date: 13 Nov 01 - 10:57 AM I've got MS and (unfortunately!) live in Sweden. We're far behind all (?) other countries regarding althernative methods and therapies. As my MS is progressive there is no medical help (yet), but I'm sure I could get a lot of help from alternative therapies, if I could afford it and perhaps travel to other countries to get what I want. One example is bee venom therapy which I've read about and found very interesting. We're also discussing it on a mailing-list for people with MS. Many are interested. It has also helped people with reumatic deseases and I think there is more evidence that it helps for those deseases. But if you happen to be allergic it may be a big risk, so it's not recommended to tease bees to get stung! You may need immediate care to survive! Kendall, you're absolutely right! Some of us who are interested in this have said that alternative or complementary ought to be called medicine traditional medicine as that it was it is! It came first! It's sad to watch the pharmaceutical industri earning lots of money on ill people and often giving them new problems that need more medicines… They don't want us to get well as we won't be profitable then!!!! :-( Allan, I'm sorry, not many swedish physicians are that intelligent... (I don't really know what tha AMA is but I can guess...) I hope my english is understandable even when I get upset and write without thinking so much! ;-) Berit in Sweden |
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Subject: RE: BS: MS From: katlaughing Date: 13 Nov 01 - 11:02 AM Berit, your English is very good and I, for one, thank you very much for the effort it takes to post in a language other than your own native tongue. I am sorry to hear that traditional (I like that) therapies are not as widely available for you in Sweden. The AMA is the American Medical Association and organisation of physicians. Much success to you in seeking the treatments you want and in health. kat |
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Subject: RE: BS: MS From: wysiwyg Date: 13 Nov 01 - 11:17 AM There is also an MS thread at Jon's Annexe where some Mudcat members like to talk about non-music topics. (Not saying this should not be discussed here! It's fine, IMO!) The Annexe thread is here: ~Susan
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Subject: RE: BS: MS From: Mary in Kentucky Date: 13 Nov 01 - 02:07 PM bernil, I just read your post and may possibly have lots of information you might be interested in. Just off the top of my head, I believe significant research has been done at the Karolinska Institute in Stockholm, Sweden. Also, I remember reading recently that one of the ABC (Avonex, Betaseron, Copaxone) drugs is effective in the treatment of progressive MS. It's been several years since I did any Internet searches for MS information, but if you would like for me to look into it again, please PM me. Because of the strong prevalence of Scandinavian ancestry in MS, I believe there are many support groups and research facilities in Sweden. I'm the Mary in Kentucky in the discussions at the Annexe that WYSIWYG linked to above. Believe me, I understand! |
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Subject: RE: BS: MS From: Celtic Soul Date: 13 Nov 01 - 02:16 PM AllanC penned: "Most informed and enlightened physicians are in favor of whatever brings positive results in the treatment of illness. They are intelligent enough to realize that there is far more to medicine than the treatments recommended by the AMA." The problem is not that they do not exist, the problem I have run into is finding them. I have run across more of the kind of Doc that tells me CFID's is "all in my head" or pawn it off on depression than I have had those willing to deal with it as a real illness. From all I have heard from those suffering MS, and those that have loved ones who suffer with it, their experience can be similar. When accepted treatments fail, many (if not most) Docs throw up their hands and say "I've done all I can". Otherwise, what accounts for the fact that many MS sufferers never hear of bee sting therapy or other non-"traditional" ("traditional" meaning accepted by the general medical community) unless it is through someone other than their primary Physician? Many Docs, I can tell you, have dissed my herbal remedies too. All I can say is that, my herbal remedies have done far more to help me than what typical American medicine has done. For more on the "Doctor as God" syndrome that seems fairly prevalent in the US, I recommend reading "Confessions of a Medical Heritic" by Dr. (something) Mendelsohn. If anyone has any suggestions for Doctors who will not send me away with a "nothings wrong with you" diagnosis for ailments I have suffered for nearly 20 years, or who will not say, "Oh, somethings wrong with you, I just can't help you", I'd be happy to try them out (so long as the commute isn't California or the like). :D |
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Subject: RE: BS: MS From: bernil Date: 13 Nov 01 - 02:49 PM Thanks, Mary but I'm not sure that I need any more information... I've been on Internet a lot since I got my diagnosis (last year, though we've figured out I've had MS for 20 years!), and have found too much about MS! All things I've saved and/or printed makes me stressed! Of course I've found a lot of interesting things too. One site I like was mentioned at the Annexe. But I know now that I'm not gonna get any ABC-drug as I've had MS for too long and I don't know if I should have taken it anyway! They're not good for the liver (and which drugs are?) and many people get other bad side effects. Depression is a common side effect from at least one of them… I'm not only impressed by science especially not since my sister died from the consequences of a bad liver after having used a lot of common drugs, scientifically "proven" to be good and safe... :-( And we've got good alternative (that is traditional, at least some of them) therapists here, it's just too expensive for me. I can go to one of them now and then but not as much as I need. I'd love to go to a certain osteopath a couple of times a month but it's not possible. Anyway he has helped me a lot when I've been there. I had no energy when I came to him the first time, but he helped me get it back! ;-) But… I'm also very curious, so I guess I'll PM you! ;-) Berit |
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Subject: RE: BS: MS From: bernil Date: 13 Nov 01 - 03:09 PM Celtic Soul, "the informed and enlightened physicians" exist here in Sweden too - I've heard wonderful fairy tales about some! Well, it seems like fairy tales to me but it's said to be real... But I have no possibility to get to one of them and it's so sad and feels so unfair! I see that you feel the same frustration. There may be help somewhere out there but how do we get it? The same moment a Doc sais "I've done all I can" he ought to say "so I'm sending you to"... an osteopath or an homeopath or whatever complementary therapist he knows about and it should not cost me more than I've payed at the Doctor (I know that differs quite a lot between diferent countries). By the way - do you have mercury in your teeth? I still have, but I'm gonna get rid of it soon... if I dare.. Berit |
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Subject: RE: BS: MS From: Willa Date: 13 Nov 01 - 03:21 PM Couldn't agree with you more, Kendall. |
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Subject: RE: BS: MS From: Art Thieme Date: 13 Nov 01 - 05:03 PM I know many folks besides me with MS. We have all tried various (and expensive) alternative therapies. I, like probably 90% of sufferers, have EVENTUALLY come to the conclusion that we were in denial about the existence of our disease and what would "cure" it -- some of us for many years. Unfortunately, there are only 3 drugs that work to delay exacerbations--and that is ALL they do. (Betaseron, Avonex or Copaxone) Some good friends of mine have tried ANYTHING out there--grasping at strws. They have cut out Aspartame, had all their silver fillings removed and replaced, taken huge amounts of vitamin C and many others, stung themselves with bee venom from thousands of those insects, supercharged their entire bodies with oxygen in high pressure chambers, etc. etc. And then, a few years later or possibly just 6 months later, MS hits 'em yet again and instead of a cane it's a walker--and a few years later it's the wheelchair--then maybe the electric scooter that kids all think would be a fun thing to ride on. Here's my take----the Art Thieme theory of alternative MS therapy: If you eat a turd pizza and, coincidentally, have a Spontaneous and natural remission of your symptoms that night (or week), you might just go on grand ole Opra's show or the news and tell the entire world how turd pizza cures MS. All kinds of good people go out and eat turd pizza. It's put on the INTERNET in the Mudcat Forum and at many MS sites that says this diet cured someone. Pizza reataurants get in their eyes---and put t.p. on their menu as a health food that (someone says)cures cancer too. I don't mean to be facetious, good people, but this is how I have come to see it. A real cure is being looked for all the time. It would be nice if bee spit does cure it. The National MS Society (New York City) is, as we speak, conducting a full scale test on the effect of bee venom on the disease. I'll let you know how it goes... Art Thieme |
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Subject: RE: BS: MS From: bernil Date: 13 Nov 01 - 05:57 PM Of course you're right, Art, lots of people don't see any changes, but there are also people who have become better or at least feel better and it seems to be because of an "alternative" tretmant of some kind. I say "seems to" as it's difficult to say with MS. Not all get better from the ABC drugs either and some get bad side effects. We don't really know! And what is called MS seems to be a lot of different diseases, it's all very individual. As for me I'm still sure that there are a lot of things that can help me live a better life. If my legs "disappear" and I have to sit in a wheelchair but can be fit and feel good, I may have quite a good life anyway. But I don't like to have to pay a lot for things. As I can't get any expensive drugs, why can't I get some alternative stuff instead? I know things that would make me feel better, e. g. psychotherapy (gestalt)which I also have to pay myself! And the osteopath I mentioned could keep on helping my energies to function better. And any treatment where I get body contact would be good for me as I don't get so much of that else! It is interesting with the bee venom stuff as it seems to moderate or stop inflammations. There is also an interesting test going on, with transplated cells, which are supposed to start producing myelin, I think. And I admit that wouldn't be so bad either! Berit |
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Subject: RE: BS: MS From: Dharmabum Date: 13 Nov 01 - 06:45 PM Amen Art! I've been on Avonex for the past six months now. I jam a inch and a half long needle into my thigh once a week & it makes me feel like crap for about 24 hours. I don't like it,but it's all we've got right now. I think the thing I find most annoying about MS is not being able to read this disease from one day to the next. One day I'm feeling energetic & getting around OK,the next I'm dozing off at 10 in the morning & my arm's too weak to play the guitar. No,there's no cure yet,but,I can't give up hope that they'll find one in my lifetime. Please excuse the rant, guys.I did my injection about 18 hours ago,& I still feel a little crabby. Ron. |
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Subject: RE: BS: MS From: Mary in Kentucky Date: 13 Nov 01 - 07:26 PM Amen Art, Amen Ron. This diesease is just too variable and complicated for easy answers. I believe each of us has to do what we feel is best. At least now the information is a lot easier to get to. I'm one who believes in total and complete honesty, and I want to know absolutely everything. It's hard for me to understand people that feel differently. I also know that a little knowledge is a dangerous thing...so I try to temper my anger and arrogance with a little humility, many times stepping back from my own opinions and analyzing and rethinking things from a different perspective...and time. There are good quack watch groups on the Internet. Of course the MS Society is one of the first places to start reading. |
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Subject: RE: BS: MS From: Celtic Soul Date: 13 Nov 01 - 08:13 PM Berit, I couldn't agree more. The thing is, if someone would like to decline a potential treatment, that should be their perogative. I would personally like to have them offered to me with as much information as has been gathered. To Art and Ron; I am sorry you both suffer...CFID's is enough of a burden, I cannot imagine having to deal with MS. Let me ask you both something, as you have better understanding of it than I...if some alternative therapy has given some of those who have tried it some relief, is it not worth a look? |
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Subject: RE: BS: MS From: Art Thieme Date: 14 Nov 01 - 12:22 AM Celtic Soul, Sure it is worth a look --or ten or twenty or fifty. I'd do just about anything to be able to pick my instruments again. (I'd even got to the crossroads. **BIG SMILE**) I quit Nutra Sweet (Aspartame) for two years 'cause a well-meaning folkie friend told me he thought it helped his wife. But I eat tons of oatmeal trying to bring down my cholesterol and I had to put sugar on it just to get it down after quitting Aspartame. Result was I gained 30 pounds and I saw no improvement in the MS or the cholesterol. But we do gotta keep trying, right? As my support group is fond of saying, I've got MS, but MS hasn't got me ! Art Thieme |
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Subject: RE: BS: MS From: Art Thieme Date: 14 Nov 01 - 12:37 AM An interesting tale: I'd had MS for about 20 years before it was diagnosed. During the last 10 of those years, I had 4 spinal (cervical and lumbar) surgeries with numerous fusions in my neck. All for the same symptoms. Not finding a cure or answers or a surgical fix eventually got me suicidal and then to Mayo Clinic where the truth was finally discerned. Such is life. It's all a great and wonderful adventure. But it sure was LIBERATING to finally KNOW what was going down. Love you all, Art |
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Subject: RE: BS: MS From: bernil Date: 14 Nov 01 - 03:06 AM As for me it was also good in one way to get the diagnosis as it explained a lot of strange things that had happened. But I promise, it's not easy to live with this even if I seem tough (?). I'm struggling all the time to find ways to handle things, aid and so on. But I can also enjoy life, even if quite a big part of it goes on here at my computer... I don't understand everything that's written here but now I realise that you Art aren't able to play your instrument and that has to be terrible! As for me walking is the big problem and I miss very much walking in the wood as it was a big part of my life. But it seems like I can live without it..?? Not quite sure... I have one friend who got the diagnoisis after removing silver fillings in a bad way. After removing it all in a secure way her symptoms disappeared! Such things give me hope even if it's also very dangerous to do this when you have neurological problems - it can get worse, at least for some time. But we're all different so we have to test things, even the "scientific" things! They are really experimenting with us! The pharmaceutial companies don't tell us evrything about the side effects for instance. By the way science (partly) sais it is safe to store mercury in our mouths... Else it has to be stored far down in the bedrock... Berit, it's quite early in the morning in Sweden, so I may be a bit muddleheaded! (a nice word I had to look up...) |
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Subject: RE: BS: MS From: GUEST,Jock Morris @ work in Edinburgh Date: 14 Nov 01 - 04:39 AM My brother has MS and the best 'treatment' he's had was the destressing of his life by taking medical retirement. Before giving up work he needed two crutches to walk and could only walk about half a mile before he was done in. Now he is walking without crutches and can walk a couple of miles. He has progressive MS, so winning so much back has been great. Scott |
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Subject: RE: BS: MS From: Big Mick Date: 14 Nov 01 - 08:50 AM Art knows how I feel about him. To him and the rest of the affected contributors, I wish to express thanks for letting us look into your lives. I am learning a great deal in reading about the range of emotions, frustrations, resignation, hope, and how you just get on with it. I pray that when my time comes to deal with something of this nature in my life that I will have the perserverance, patience, and wisdom that I see expressed here. All the best, Mick |
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Subject: RE: BS: MS From: Dharmabum Date: 14 Nov 01 - 08:55 AM Celtic Soul, To answer your question,yes,absoloutly. I was diagnosed in 1984 at age 30 with a relapsing/remitting form of MS.At the time the ABC drugs were not available & I probably wouldn't have taken them anyway. I did persue alternative methods such as homeopathic remedies,vitamin therapy,living as stress free as posible,etc. After two initial MS attacks within the first 5 months of onset,the MS went into remission for 8 years. Can I attribute this to the alternative treatment? Not really,but it didn't hurt. If alternative methods are what you're comfortable with & they seem to work for you,then by all means,go for it. But I think it's important to learn as much as you can about whatever methods you choose. There's much about MS that we have no control over. Making educated decisions about treatment is something we do have control of. I held off on using medication for as long as I was comfortable with. But there came a time when I had to give in (but not give up)to the reality of this disease. For the past 10 years I've had a relapse about every 2 years. Each one leaving a bit more permanent damage to my system. I've been on Avonex for 6 months now. It is not a cure for MS. The hope is, that it will slow down the progression of the disease. I see a neurologist on a regular basis & I'm monitored pretty closely for changes in liver function. My hope is that they will find a cure for MS in my lifetime,and maybe the meds will buy me some time while I'm waiting. In the meantime,I make the most of the good days.There's still alot of those left. I'm lucky in that I can still get around pretty well, (Although,somewhat shakey)without the use of crutches. I do have to use a cane if I'm on my feet for any extended amount of time.
For anyone interested,there's a book called "Bee in Balance" written by,Amber Rose,L.Ac.,L.C.S.W.
This has got some good information about BVT. Ron. |
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Subject: RE: BS: MS From: Peg Date: 14 Nov 01 - 09:16 AM Hi Dharma/Ron! (he gets around great--I would not have guessed he had MS-- and is a fine musician, to anyone who has not met him). My mom has it. She is not all that open-minded about alternative therapies. I think that auto-immune disorders to a large extent are affected by each individual's attitude towards their health and lifestyle. Some people have more will to ive and be cured than others. My mother smokes and has for many years. I think she also has low-grade depression but wuld never admit this. Different generation, different attitude towards how mich "control" you have over your health. My mom's generation seems to, for the most part, depend on doctors and traditional medicine and not seek out their own answers, but rather rely on what they are told. It is wonderful that many of us now understand Western medicine does not have all the answers and there are ways to in fact be proactivein our own healing...
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Subject: RE: BS: MS From: Dharmabum Date: 14 Nov 01 - 10:07 AM Thanks Peg,what a sweetheart! I think you're right about the generation thing. My sister ,who's quite a bit older than me,is in pretty bad shape with Lupis(another autoimmune disease).Unfortunately,her condition is so much worse because of the medications the doctors fed her over the past 20 or so years. It was ironicly,just that, that made me take control over my own healthcare decisions. Ron. |
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Subject: RE: BS: MS From: Dharmabum Date: 14 Nov 01 - 10:17 AM I also wanted to mention,there is a slow but sure change in attidude in the medical community towards alternative medicine, and vice versa. It's as if ,we the patients,have to be the well informed mediators between the two. I think they both have something good to offer,we just have to decide ,individually, what those advantages may be. Ron. |
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Subject: RE: BS: MS From: bernil Date: 14 Nov 01 - 12:06 PM Ron, I agreee with you, it's changing and we have a responsibility to show what we need and want! Even here in Sweden it's slowly, slowly getting better. Unfortunately Doctors unwillingness to admit that there may be other ways to get help/mitigation etc when they can't do anything, has made me angry and disappointed of them. I admit that Doctors can also do good things! I think that the best would be if they could cooperate with alternative practioners. And there are Doc's who can do that but very,very few... Preferably I'd like to meet someone like Dr Weil, whose books I have and I try to follow at least some of his advices. He has been a "common Doctor" but now has accepted and developed a lot of alternative thoughts and that's just perfect! Check out Dr Weil! You can search for MS. Berit |
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Subject: RE: BS: MS From: bernil Date: 14 Nov 01 - 12:33 PM I mean search for multiple sclerosis... I saw now he has written about bee venom therapy: Bee Sting for healing? Berit |
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Subject: RE: BS: MS From: Dharmabum Date: 14 Nov 01 - 01:08 PM Berit,Dr.Weil is a perfect example of how the medical community is beginning to open up to alternative methods of healing. From what I see,his theory is to basicly tackle the disease with whatever traditional therapy necessary,but then to keep it in check with alternative & more natural healing methods. Ron. |
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Subject: RE: BS: MS From: Art Thieme Date: 14 Nov 01 - 01:33 PM On the TV show THE WEST WING, the president of the U.S.A. has been given MS by the writers. I gave up on TV a while back and let my cable go (There is a song there I know.) How has HIS MS been depicted on that pretty good program? I know it's hard for family members to accept the changing face of my MS to the extent that hey're constantly saying things like (when I'm in a wheelchair for longer than a block-long excursion), "You don't really need that hing, do you?" or, "What's that for now?"---I guess I'm wondering if putting MS on a popular TV show will cause the general public to think that the disease ought to always be the way it is when Martin Sheen acts it out when he is supposed to have it!? Art Thieme |
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Subject: RE: BS: MS From: Art Thieme Date: 14 Nov 01 - 01:39 PM Looking at the photo of Dr. Weil, I must say that I just don't trust anyone whose head looks to be on his neck upside-down!!!*smile* Art |
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Subject: RE: BS: MS From: Mary in Kentucky Date: 14 Nov 01 - 04:45 PM Art, I'm curious also to see how TV treats the prez. I've nearly given up on TV also, but tried to watch two episodes of West Wing...fell asleep both times! Frankly I'm skeptical of how they'll treat MS. So many people get their only information from one relative or one TV show or movie. I remember when the man who prosecuted McVeigh responded to people who wanted him to be a poster boy for MS...he declined saying that he was not the typical MS case in that he didn't have fatigue. Too many people would look at him and say to loved ones, "See, he can do it. (implying, why can't you.)" Your family members remind me of the first race I ran in, The Midnight Chase, 4 miles through a residential area at midnight, people lining the streets hollering at me, "You can do it! Run! You go girl! Way to go! You can do it! Push harder!" I sincerely felt like hitting them! They just didn't know I was dying. When I was first diagnosed my doctor gave me all kinds of information. I told her I didn't need it, but my family did. They have always been in denial. To this day my mother cannot say the words multiple sclerosis; it's always "that disease." The hardest part for me before my diagnosis was public was the silence and denial from everyone around me. Oh yes, I tried the oatmeal too. It brought my blood pressure down the first seven times I tried it. I've also tried meditation, just couldn't meditate 24/7. And then there was the time I tried to "wish" off a wart...it's supposed to work. It seems to me that in so many discussions about medicine, healing, well-being, etc. there is not a consideration for "weighting" the various factors. What I mean is, and Dr. Weil also states, heredity is not only a factor in our susceptibility to disease and aging, but far more important than other factors. When people talk about side effects from medicine, I say, "Hell, Betaseron is 10 times more potent than anything else I put in my body." The most important thing I can do for longevity is to wear a seat belt. The second is lose weight. |
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Subject: RE: BS: MS From: Art Thieme Date: 14 Nov 01 - 09:10 PM Mary, I hear you. I'm told I have Chronic Progressive MS and the big 3 drugs won't do much but give me their lousy side effects. (Jerry was talking about me in that other alternative thread at the other alternative website. My recent memory and ability to find the right words in conversations really is all shot. Sorry, folks if I repeat myself once in a while.) The best of everything to you. Art |
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Subject: RE: BS: MS From: Celtic Soul Date: 14 Nov 01 - 10:06 PM Ron, Berit and Art... Thanks a whole lot, Gentlemen. You guys have helped me understand a little better where you're coming from. The one thing I can say with all certainty is that you all have a great deal of grace and calm. I applaud your genuineness and transparency. Thanks! :D |
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Subject: RE: BS: MS From: bernil Date: 15 Nov 01 - 09:15 AM Celtic soul, grace and calm sounded so nice, I had to look them up in my dictionary! ;-) I hope it's true! And transparency... I hope it's a good quality too. I don't understand evrything... Thanks for starting this this interesting thread and good luck with your health problems! By the way this gentleman is a woman! ;-) Berit |
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Subject: RE: BS: MS From: Mary in Kentucky Date: 15 Nov 01 - 09:28 AM Berit, I noticed that. Welcome to the zoo. Some of the "animals" are "horsing around" over on the gender thread! That means several people are teasing each other about not knowing if a person is male or female just by the name they use on this forum. You can almost always tell by listening carefully to what they say or establishing a personal relationship with them by writing to them using the Personal Messages. I've seen this happen before here. Just for the record, I'm female. It seems obvious, but one time I had a student named Paul Mary. (His last name was Mary.) |
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Subject: RE: BS: MS From: Peg Date: 15 Nov 01 - 09:33 AM Ron; I know we talked at Old Songs aout all this; but I do not remember learning your sister has Lupus. M8ine did too! Arthritic kind. I think she does not have it any more. She got very run down and was not taking very good care of herself. (she also smokes cigarettes). My mother also was diagnosed with juvenile diabetes at age 35 (ten years after being diagnosed with MS, which was in remission until about 10 years ago).Auto-immune disorders often come in pairs. My brother was diagnosed with the same type of diabetes at the same age as my Mom and his daughter was also diagnosed with Type 1 Diabetes at age 11. I consider myself very fortunate not to be afflicted with these many diseases my family suffers from. My younger brother is fine too. Interestingly enough, he and I are the only ones who are not chronic cigarette smokers...
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Subject: RE: BS: MS From: Celtic Soul Date: 15 Nov 01 - 09:40 AM OOPS! So sorry, Berit! I suppose I should not have assumed as to your gender. In any case, I think your english superb, and a heck of a lot better than my Swedish in any case! Transparency in this case means that you were willing to share quite a lot about yourself in an unselfish way, so I'd say that's a good thing! |
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Subject: RE: BS: MS From: Art Thieme Date: 15 Nov 01 - 12:51 PM Transparency might also mean that you can see right through me and my motives and the stands I take and the overzealousness I exhibit probably too often or not often enough (as is your wont) given OUR own personal baggage that we must or choose to carry into this forum. Love, Art |
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Subject: RE: BS: MS From: Dharmabum Date: 15 Nov 01 - 02:01 PM Peg, That's really ironic that your sister would have Lupus also.(I spelled it correctly this time) I've often wondered about the hereditary links with autoimmune diseases. They seem to happen all too often. It's difficult to trace family history sometimes,at least when trying to find some kind of link to MS. So often the symptoms were disguised as other ailments,or the symptoms would go into remission and quite possibly never be reported to a doctor.I've heard rumors of great uncles or aunts that might have walked with a cane or something to that effect. Usually,none of this stuff was ever documented,and in many cases the symptoms are not visible.
This may actually sound kind of strange to some folks,but,in a way,MS has really provided me with some very valuable lessons.
Guess I'll mosey off now. Ron. |
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Subject: RE: BS: MS From: Mary in Kentucky Date: 15 Nov 01 - 02:24 PM Yes Ron, like I stated at the Annexe, I have three autoimmune diseases. The links at the MS Society website are a very good starting point for searching the journals on heredity and MS. Then there is another site which I seemed to have lost just now that was published last year in Human Genetics Journal which has documented a form of hereditary biochemical MS. Much of the research points to Scottish ancestry! |
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Subject: RE: BS: MS From: CarolC Date: 15 Nov 01 - 02:56 PM Dharmabum,
It appears that autoimmune disorders do sometimes cluster in families. Celtic Soul is my sister. She and I both suffer from CFIDS (Chronic fatigue immune disfunction syndrome), and I have fibromyalgia as well. Both of these are autoimmune disorders. I don't know if Celtic Soul has fibromyalgia or not.
We have another sister who also has some symptoms of CFIDS, although not as severe as what Celtic Soul and I experience. Out of five siblings in my family, at least three of us experience symptoms of at least one autoimmune disorder. |
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Subject: RE: BS: MS From: bernil Date: 15 Nov 01 - 03:30 PM Quite a new theory point to the Vikings and their travels as a source for the prevalence of MS, but it's just a theory... Concerning other autoimmune diseases I had at least heard that people with MS often (?, at least more often than others) get Crohns disease. But there's a big risk for any other autoimmune disease? It is really be enough with one of them! Ron, I like this; "I've really learned to appreciate the simple things that life has to offer" and I can say I've learned that too. Unfortunately I still worry, at least sometimes, though I know it's a VERY stupid thing to do! Berit who thinks she likes to be transparent and acknowledges that she looks up some words... and that it's for instance hopeless to find the right prepositions ;-) |
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Subject: RE: BS: MS From: Art Thieme Date: 15 Nov 01 - 08:19 PM Ron, You've got it right. Berit, In the USA it hits people in the cold climates much more than in Florida, Texas, Arizona or New Mexico. There are exceptions though. I recently found out, from his widow, that my half brother (who I never knew) had MS too. We had the same father. Also, women get it more than men do here. Art Thieme
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Subject: RE: BS: MS From: Wolfgang Date: 16 Nov 01 - 12:43 PM I have a good fried recently diagnosed with MS, my wife has a close friend...I wish for all who have it that a good cure or at least a good relief will be found soon. I personally do not give a damn whether this is found by a large scale study from the profit seeking pharma industry, by a university professor working alone, as a byproduct of a study with a different aim, by the lucky guess of a family doctor going for alternative ideas, or even by the freak long shot from a lay maverick. But I do care for proper evaluation once a promising and at the first glance possible idea has been presented and has sampled some anecdotal support. I want to know whether it works at least a bit for all, or perhaps only for a small subgroup, or not better than doing nothing (anectodal support coming from causally interpreting phases of remission), or if it even harms. Even if the only harm done are wrong hopes and loss of money I'd want to know.
As for the bee sting therapy I got interested and did a search: Wolfgang |
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Subject: RE: BS: MS From: Mary in Kentucky Date: 16 Nov 01 - 02:20 PM Art, I wondered also about a tendency to hesitate and stumble for just the right word. But ya know, I only have ONE friend with a big enough vocabulary for this to ever be an issue! I did notice about seven years ago when I was quoted in a national science journal that I tend to talk in short, choppy sentences. I always assumed that this was because of the physical difficulty I have in speaking. I do twice as much thinking trying to figure out how to say things in short sentences. I've noticed stroke victims use the same trick. Also, everytime I have a new little pain, or feel nauseous, or blue, or tired, or just lazy, in the back of my mind I wonder if it's MS. (You've probably heard all the jokes about...no, it's just getting older.) Ron, I know what you mean about, "Don't sweat the small stuff." Several years ago Katie Couric interviewed Christopher Reeve (the superman actor who was paralyzed from the neck down) and asked if he were scared when he went before a large audience. With that twinkle in his eye he replied (paraphrasing), "When you've been to the brink, nothing upsets you." That had so much meaning for me, but none of my friends seemed to get it. Berit, I remember reading that Viking information last year. I laughed out loud when I thought of all those Vikings "spreading their seed" amongst the Northern Climes. PM me if you don't understand that expression. RE: research The immune system has been one of the hottest fields in research for the last 30 years. With the new genetic knowledge and all the money pouring into AIDS research, new discoveries are being made everyday. Aside from all personal interests, it's a fascinating news story to follow. |
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Subject: RE: BS: MS From: bernil Date: 16 Nov 01 - 05:02 PM Mary, I understand about the Vikings, and it's quite a funny thought... ;-) |
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Subject: RE: BS: MS From: Art Thieme Date: 16 Nov 01 - 05:42 PM And the Vikings got it fom their wives (or whatever) -- as a bi-product of PMS !!! ;-) Art |