Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 I am angry. Not that I have MS, but that our medical community is not really searching for the cause(s), nor are they listening to us at all. For the most part, they continue in the wrong direction, full speed ahead, and disregard the discoveries that could lead to a much greater understanding. I feel I have been let down by virtually every doctor during my entire journey. None of them believed diet was of any consequence, none of them listened to my list of pre-flareup events or linked them to anything, none of them listened to my intuitions about what was happening to my body. With the length of time that MS has been around, and with the increase in numbers in the last couple of decades, there is no excuse for any of us to have to feel alone. That is, we are alone with regards to medical help. We have each other, bless the internet, so our knowledge and understanding are increasing at a fantastic rate. A true "Eureka, I have found it!" will come, but it will come from us, not allopathic medicine. And it will come with the assistance of just a few trained physicians - the Dr. Bihari's, Dr. Lawrence's, and the fascinating DogtorJ. (I have always preferred my vet to my own doctor and wished she could treat people too.) Thank you for the soapbox, I feel much better now. ----- Original Message ----- From: chrdana7@... low dose naltrexone Sent: Saturday, August 21, 2004 9:37 AM Subject: [low dose naltrexone] Disclosure of MS It was 11 years ago this week when I learned that I probably had MS and I didn't know who I should tell. I was in a real tough spot because my wife had been diagnosed with MS 8 years earlier and she was quite disabled from it. I didn't really care who knew I had MS with the exception of my two children. My boys were age 19 and 11 at the time and they had watched MS cripple their mother over the past few years so I didn't know how I was going to tell them that I had the same disease. A few family members knew that I had MS and before long many people knew it. It's the old "I won't tell anybody!" but soon the world knows. I didn't want my kids hearing this devastating news from an outside source so I decided to tell them. My oldest son was in college so I broke the news to him while giving him a ride back to school. Needless to say he was in shock but he handled the news pretty well. We were both concerned about how his younger brother was going to take the news so we decided to hold off for awhile. Word travels fast in a small town so within a few months I realized that I had to tell my younger son. I took him out to eat and after the meal I broke the news to him. I'll never forget the fear that I saw in his eyes when he heard the news. I sat with him for over an hour and told him what I could about MS. I explained that the disease took a different course in everyone and asked him if he would have known that I had MS if I hadn't told him. He told me that he couldn't and I told him that I'd do my best to keep it that way. Looking back, I would have to say that my kids took the news better than anyone else. Many people, family and friends, just ran away from the situation and cut me out of their lives but my kids have always been there for me. Let's face it, there's not much that anyone else can do for you if you have MS but running away is the worst thing that people can do. Many people treat MS like it's leprocy, which makes the disease only that much harder ! to deal with. Yes, both my wife and I were stricken by MS but I didn't catch it from her. We probably both got it from something in the environment, the same environment that everyone else is subjected to so nobody is immune. I'm getting off subject and my anger is showing so I'd better close. I'm not really angry that I have MS or even that both my wife and I have it. I'm very angry at how the rest of the world treats those of us who have MS. They treat us as if we should lock ourselves in a room and not bother with the world outside. I don't think so! Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi Good luck to both of you. I admire your strength. Marie ----- Original Message ----- From: chrdana7@... low dose naltrexone Sent: Saturday, August 21, 2004 12:37 PM Subject: [low dose naltrexone] Disclosure of MS It was 11 years ago this week when I learned that I probably had MS and I didn't know who I should tell. I was in a real tough spot because my wife had been diagnosed with MS 8 years earlier and she was quite disabled from it. I didn't really care who knew I had MS with the exception of my two children. My boys were age 19 and 11 at the time and they had watched MS cripple their mother over the past few years so I didn't know how I was going to tell them that I had the same disease. A few family members knew that I had MS and before long many people knew it. It's the old "I won't tell anybody!" but soon the world knows. I didn't want my kids hearing this devastating news from an outside source so I decided to tell them. My oldest son was in college so I broke the news to him while giving him a ride back to school. Needless to say he was in shock but he handled the news pretty well. We were both concerned about how his younger brother was going to take the news so we decided to hold off for awhile. Word travels fast in a small town so within a few months I realized that I had to tell my younger son. I took him out to eat and after the meal I broke the news to him. I'll never forget the fear that I saw in his eyes when he heard the news. I sat with him for over an hour and told him what I could about MS. I explained that the disease took a different course in everyone and asked him if he would have known that I had MS if I hadn't told him. He told me that he couldn't and I told him that I'd do my best to keep it that way. Looking back, I would have to say that my kids took the news better than anyone else. Many people, family and friends, just ran away from the situation and cut me out of their lives but my kids have always been there for me. Let's face it, there's not much that anyone else can do for you if you have MS but running away is the worst thing that people can do. Many people treat MS like it's leprocy, which makes the disease only that much harder to deal with. Yes, both my wife and I were stricken by MS but I didn't catch it from her. We probably both got it from something in the environment, the same environment that everyone else is subjected to so nobody is immune. I'm getting off subject and my anger is showing so I'd better close. I'm not really angry that I have MS or even that both my wife and I have it. I'm very angry at how the rest of the world treats those of us who have MS. They treat us as if we should lock ourselves in a room and not bother with the world outside. I don't think so! Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 kewl ----- Original Message ----- From: " Landau " <carrieland2@...> <low dose naltrexone > Sent: Saturday, August 21, 2004 11:22 PM Subject: [low dose naltrexone] Disclosure of MS > Audrey, when I diagnosed eight months ago, I told the people I'm closest > to--it was obvious something was wrong. I found that a couple of people > were actually relieved, because I didn't have cancer! With people I work > with and acquaintances, I have only brought it up if it's relevant or > feels right. My walking's really been off and sometimes people have > wanted to ask, but didn't want to be intrusive. > > I have found that not keeping it a secret has made life easier, because I > don't have to justify my fatigue or my suggestion that we get together > close to home (for me). I think it's also helping me to accept my > condition. MS is a very big part of my life right now; even though I > work full-time, I really don't function normally, at least the old > " normal. " So for me, airing it had made it easier. > > > > P.S. I'm starting a new job in September, teaching drama, and despite > everything I've said above, I'm not telling them! At least not now. > > ________________________________________________________________ > The best thing to hit the Internet in years - Juno SpeedBand! > Surf the Web up to FIVE TIMES FASTER! > Only $14.95/ month - visit www.juno.com to sign up today! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hey , It's a shame and I believe most of us realize it on this board. If it's not making a lot of $$money$$ for someone, very few people get excited about new finding that are working for those of us that have MS. Hope everyone is having a great weekend! We have each other, that's something to get excited about! From: [mailto:jatrac1@...] Sent: Saturday, August 21, 2004 1:08 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Disclosure of MS I am angry. Not that I have MS, but that our medical community is not really searching for the cause(s), nor are they listening to us at all. For the most part, they continue in the wrong direction, full speed ahead, and disregard the discoveries that could lead to a much greater understanding. I feel I have been let down by virtually every doctor during my entire journey. None of them believed diet was of any consequence, none of them listened to my list of pre-flareup events or linked them to anything, none of them listened to my intuitions about what was happening to my body. With the length of time that MS has been around, and with the increase in numbers in the last couple of decades, there is no excuse for any of us to have to feel alone. That is, we are alone with regards to medical help. We have each other, bless the internet, so our knowledge and understanding are increasing at a fantastic rate. A true "Eureka, I have found it!" will come, but it will come from us, not allopathic medicine. And it will come with the assistance of just a few trained physicians - the Dr. Bihari's, Dr. Lawrence's, and the fascinating DogtorJ. (I have always preferred my vet to my own doctor and wished she could treat people too.) Thank you for the soapbox, I feel much better now. ----- Original Message ----- From: chrdana7@... low dose naltrexone Sent: Saturday, August 21, 2004 9:37 AM Subject: [low dose naltrexone] Disclosure of MS It was 11 years ago this week when I learned that I probably had MS and I didn't know who I should tell. I was in a real tough spot because my wife had been diagnosed with MS 8 years earlier and she was quite disabled from it. I didn't really care who knew I had MS with the exception of my two children. My boys were age 19 and 11 at the time and they had watched MS cripple their mother over the past few years so I didn't know how I was going to tell them that I had the same disease. A few family members knew that I had MS and before long many people knew it. It's the old "I won't tell anybody!" but soon the world knows. I didn't want my kids hearing this devastating news from an outside source so I decided to tell them. My oldest son was in college so I broke the news to him while giving him a ride back to school. Needless to say he was in shock but he handled the news pretty well. We were both concerned about how his younger brother was going to take the news so we decided to hold off for awhile. Word travels fast in a small town so within a few months I realized that I had to tell my younger son. I took him out to eat and after the meal I broke the news to him. I'll never forget the fear that I saw in his eyes when he heard the news. I sat with him for over an hour and told him what I could about MS. I explained that the disease took a different course in everyone and asked him if he would have known that I had MS if I hadn't told him. He told me that he couldn't and I told him that I'd do my best to keep it that way. Looking back, I would have to say that my kids took the news better than anyone else. Many people, family and friends, just ran away from the situation and cut me out of their lives but my kids have always been there for me. Let's face it, there's not much that anyone else can do for you if you have MS but running away is the worst thing that people can do. Many people treat MS like it's leprocy, which makes the disease only that much harder ! to deal with. Yes, both my wife and I were stricken by MS but I didn't catch it from her. We probably both got it from something in the environment, the same environment that everyone else is subjected to so nobody is immune. I'm getting off subject and my anger is showing so I'd better close. I'm not really angry that I have MS or even that both my wife and I have it. I'm very angry at how the rest of the world treats those of us who have MS. They treat us as if we should lock ourselves in a room and not bother with the world outside. I don't think so! Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2004 Report Share Posted August 22, 2004 Hi What a powerful story, yes all of us can certainly relate to how you must of felt letting your son's and the outside world know about your MS. You've got to stay strong not only for your family but try to maintain an inner strength for yourself as well. This is one of the first times I'm giving the environment as a big possibility as a cause to this forsakin disease. hope you and your family are having a great weekend. From: Marie Deady [mailto:Mardea@...] Sent: Saturday, August 21, 2004 7:41 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Disclosure of MS Hi Good luck to both of you. I admire your strength. Marie ----- Original Message ----- From: chrdana7@... low dose naltrexone Sent: Saturday, August 21, 2004 12:37 PM Subject: [low dose naltrexone] Disclosure of MS It was 11 years ago this week when I learned that I probably had MS and I didn't know who I should tell. I was in a real tough spot because my wife had been diagnosed with MS 8 years earlier and she was quite disabled from it. I didn't really care who knew I had MS with the exception of my two children. My boys were age 19 and 11 at the time and they had watched MS cripple their mother over the past few years so I didn't know how I was going to tell them that I had the same disease. A few family members knew that I had MS and before long many people knew it. It's the old "I won't tell anybody!" but soon the world knows. I didn't want my kids hearing this devastating news from an outside source so I decided to tell them. My oldest son was in college so I broke the news to him while giving him a ride back to school. Needless to say he was in shock but he handled the news pretty well. We were both concerned about how his younger brother was going to take the news so we decided to hold off for awhile. Word travels fast in a small town so within a few months I realized that I had to tell my younger son. I took him out to eat and after the meal I broke the news to him. I'll never forget the fear that I saw in his eyes when he heard the news. I sat with him for over an hour and told him what I could about MS. I explained that the disease took a different course in everyone and asked him if he would have known that I had MS if I hadn't told him. He told me that he couldn't and I told him that I'd do my best to keep it that way. Looking back, I would have to say that my kids took the news better than anyone else. Many people, family and friends, just ran away from the situation and cut me out of their lives but my kids have always been there for me. Let's face it, there's not much that anyone else can do for you if you have MS but running away is the worst thing that people can do. Many people treat MS like it's leprocy, which makes the disease only that much harder to deal with. Yes, both my wife and I were stricken by MS but I didn't catch it from her. We probably both got it from something in the environment, the same environment that everyone else is subjected to so nobody is immune. I'm getting off subject and my anger is showing so I'd better close. I'm not really angry that I have MS or even that both my wife and I have it. I'm very angry at how the rest of the world treats those of us who have MS. They treat us as if we should lock ourselves in a room and not bother with the world outside. I don't think so! Best Wishes, Quote Link to comment Share on other sites More sharing options...
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