Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi, , I do understand how you feel. Twenty years of doctors not responding to what I tell them, or responding in a way that does not add up, or their just being plain insulting, has left me very very frustrated myself. I usually don''t let myself go there emotionally, because it is too destructive to me. Believe me the rage and frustration was strong. Personally, I gave up getting answers from docs a long time ago. Years and years ago I said to my husband - really these words - " I have a disease that they don't have a name for yet, so it seems pointless to put myself though more of the same stupid, insulting interviews. I need to wait until they at least have a name, then maybe they will get a treatment " I still went for routine things, like mamagrams, infections, checkups, etc. I gave each doc ONE crack at the other symptoms, and if they did not respond properly, I just wrote them off for my problems. And I had years and years of bad times. I am soooooo heartened to learn about mitochondrial disease, and to hear others here experience SOME of my symptoms. It makes me feel less alone, and gives me more hope. Also, I accidentally found a doc who at least recognizes mito as a disease. I am hopeful that as more is learned, he will keep up with it. I also decided a long time ago to try to follow good health habits - diet, exercise, hydration, anything that I could find that made sense TO ME. That also gave me some feeling of control. I am feeling better, in part I think, due to the mito cocktail and in part to exercise and in part to watching my carbs (I get hypoglycemic) , my symptoms are not as severe as yours. Extreme muscle weakness, mental cloudiness, and general fatigue are/were the main serious ones.(also touches of many others, that i just took for granted as part of my body) I have learned of the many other serious problems that people experience. I am totally empathetic to your frustration about getting medical care. It can be overwhelming. We need to be persistent. I am not sure what tests you had done, and by what kind of specialist. One thing I have learned is NOT to believe everything that every doctor has said to me. When what they say matches my experience, then I begin to believe. Check on all the tests you had, and see what more can be done. Try to find the right doctor for it, even if it means traveling. I do not have stroke-like episodes. Others here may be able to help you on that score. Don't give up. Be methodical, patient, read as much as possible, ask as many questions as possible. Read everything here, the UMDF site, the MDA site. Know that getting answers isn't simple, and that they may not always be what you want to hear, but believe that some may exist for you. It took me 2 years to believe that I had mito, and to learn enough about it, so that I feel I am in the right ball park. Now I feel more optimistic, thinking that I can make the best possible decisions for me. Having this site to learn from has also been so very helpful to me. In total, feeling that I have some control is very precious to me, and it makes me feel less frustrated. I wish you luck in your search. There are so many great people here. Benefit from their wisdom, knowledge, and support. Vent when you need to! Warm regards Sunny > --- > Hi Celia, > > I'm sooo glad to know you really understand because I just need to > hear that right now. > > I AM SOOOOOOO frustrated I don't know what the heck to do. I'm not > depressesd or angry. I'm just very frustrated. > > I have tried EVERYTHING to seach for an answer and I'm at a total > brick wall. I've seen every kind of doctor, been to every hospital > and had every test. > > There is ONLY one thing to do now and that's to go on TV and beg for > someone to help me. I've been e-mailing 1 station a day. Today I'm > going to call one. > > I know I have a strange problem and I really understand that, but > when I'm having a strokelike episode, and I have to pray not to die > I can't take that. I can't even go to the ER no matter how bad I > feel because they all know me and I know they won't find anything. > They treat me like crap in the er so I never go anymore now for > almost 2 years. > > I've been just trying to take this, but the last few episodes left > me with some lasting affects. I always get over everything, but > I'm having periods of drawing a blank when I talk and looking dazed. > > When I had a medium attack last week, my husband came in the room > and I couldn't speak to him for about a minute because I couldn't > procsess what he was saying to me. He said why are you staring at > me? > > Sooo I need help. I'm sick Of seeing new doctors because once I > tell them the story(even though I make it very short and simple now) > They can't deal with it and go into melt down. > > I really don't have anymore reason to go because I've have > everything done. > > What do I do? > > Sorry to go on, but i needed to just get it off my chest today. I > love my life, even the hard times, it has made me strong, but not > having the right medical help is scarry. > > Thanks laurie and alice for writing me back too. > > > > > > > > > > > > In , " cghng888 " wrote: > > -Oh , I'm sorry you are still having such a rough time- and > still > > undiagnosed. This is so me, you don;'t know how much I empathize > with > > you. It is just so frustrating dealing with these docs. What I find > > the hardest is continually being labled as " functional disorder " > Each > > one passes this to the next one, so I feel like I never get a fair > > shake. meanwhile my life is falling apart. I have just been > referred > > to my FIRST endocrinologist,after 16 years, Go figure. I hope you > can > > find a caring and helpful physician, Celia- > > > > - In , " tanya2727 " wrote: > > > I have a friend I meet through the MDA 2 yrs ago. She was on > this > > > site for a short time and had suspected mito. Well she had all > the > > > test we've had ,muscle biop and emg, mri. Her test was all neg. > > > > > > She went to Europe and had all test over and they showed mito > > > finally. But she said now that she's back she can't find a > doctor > > > to treat her. > > > > > > I had been doing somewhat ok for a few months, then in june > things > > > got bad again. I'm having the strokelike episodes alot and have > > > lasting weakness and slow thoughts at times. I have a headache > 24/7. > > > > > > Lets not talk about fatigue! My muscles are shaking all the > time. > > > There are so many other symptoms, but I'm on lots of meds for > most > > > alot of them, so I just try to cope everyday. > > > > > > Since the attacks have come back, I'm trying to continue with my > > > search for a DX. I went to the lab for blood work and the tech > told > > > me about a lady who came in all the time in a wheel chair. She > was > > > real sick and had been to many doctors. Well she found the > right > > > one who found out her problem and she went to a walker to cane > and > > > then walking on her own. > > > > > > I need to hear that so much today. It's getting harder to fight > and > > > search. > > > > > > Last weak I went to my 50th endocrinoligist. As soon as she > walked > > > in I knew she wasn't going to even try, and she didn't. I > wans't > > > feeling well so I cried after the visist in my car BUT, I > quickly > > > recovered. I getting much better at this :-). > > > > > > I know many of you are going through VERY rough times and You > will > > > be in my prayers. > > > > > > I will not give up, > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi, , I do understand how you feel. Twenty years of doctors not responding to what I tell them, or responding in a way that does not add up, or their just being plain insulting, has left me very very frustrated myself. I usually don''t let myself go there emotionally, because it is too destructive to me. Believe me the rage and frustration was strong. Personally, I gave up getting answers from docs a long time ago. Years and years ago I said to my husband - really these words - " I have a disease that they don't have a name for yet, so it seems pointless to put myself though more of the same stupid, insulting interviews. I need to wait until they at least have a name, then maybe they will get a treatment " I still went for routine things, like mamagrams, infections, checkups, etc. I gave each doc ONE crack at the other symptoms, and if they did not respond properly, I just wrote them off for my problems. And I had years and years of bad times. I am soooooo heartened to learn about mitochondrial disease, and to hear others here experience SOME of my symptoms. It makes me feel less alone, and gives me more hope. Also, I accidentally found a doc who at least recognizes mito as a disease. I am hopeful that as more is learned, he will keep up with it. I also decided a long time ago to try to follow good health habits - diet, exercise, hydration, anything that I could find that made sense TO ME. That also gave me some feeling of control. I am feeling better, in part I think, due to the mito cocktail and in part to exercise and in part to watching my carbs (I get hypoglycemic) , my symptoms are not as severe as yours. Extreme muscle weakness, mental cloudiness, and general fatigue are/were the main serious ones.(also touches of many others, that i just took for granted as part of my body) I have learned of the many other serious problems that people experience. I am totally empathetic to your frustration about getting medical care. It can be overwhelming. We need to be persistent. I am not sure what tests you had done, and by what kind of specialist. One thing I have learned is NOT to believe everything that every doctor has said to me. When what they say matches my experience, then I begin to believe. Check on all the tests you had, and see what more can be done. Try to find the right doctor for it, even if it means traveling. I do not have stroke-like episodes. Others here may be able to help you on that score. Don't give up. Be methodical, patient, read as much as possible, ask as many questions as possible. Read everything here, the UMDF site, the MDA site. Know that getting answers isn't simple, and that they may not always be what you want to hear, but believe that some may exist for you. It took me 2 years to believe that I had mito, and to learn enough about it, so that I feel I am in the right ball park. Now I feel more optimistic, thinking that I can make the best possible decisions for me. Having this site to learn from has also been so very helpful to me. In total, feeling that I have some control is very precious to me, and it makes me feel less frustrated. I wish you luck in your search. There are so many great people here. Benefit from their wisdom, knowledge, and support. Vent when you need to! Warm regards Sunny > --- > Hi Celia, > > I'm sooo glad to know you really understand because I just need to > hear that right now. > > I AM SOOOOOOO frustrated I don't know what the heck to do. I'm not > depressesd or angry. I'm just very frustrated. > > I have tried EVERYTHING to seach for an answer and I'm at a total > brick wall. I've seen every kind of doctor, been to every hospital > and had every test. > > There is ONLY one thing to do now and that's to go on TV and beg for > someone to help me. I've been e-mailing 1 station a day. Today I'm > going to call one. > > I know I have a strange problem and I really understand that, but > when I'm having a strokelike episode, and I have to pray not to die > I can't take that. I can't even go to the ER no matter how bad I > feel because they all know me and I know they won't find anything. > They treat me like crap in the er so I never go anymore now for > almost 2 years. > > I've been just trying to take this, but the last few episodes left > me with some lasting affects. I always get over everything, but > I'm having periods of drawing a blank when I talk and looking dazed. > > When I had a medium attack last week, my husband came in the room > and I couldn't speak to him for about a minute because I couldn't > procsess what he was saying to me. He said why are you staring at > me? > > Sooo I need help. I'm sick Of seeing new doctors because once I > tell them the story(even though I make it very short and simple now) > They can't deal with it and go into melt down. > > I really don't have anymore reason to go because I've have > everything done. > > What do I do? > > Sorry to go on, but i needed to just get it off my chest today. I > love my life, even the hard times, it has made me strong, but not > having the right medical help is scarry. > > Thanks laurie and alice for writing me back too. > > > > > > > > > > > > In , " cghng888 " wrote: > > -Oh , I'm sorry you are still having such a rough time- and > still > > undiagnosed. This is so me, you don;'t know how much I empathize > with > > you. It is just so frustrating dealing with these docs. What I find > > the hardest is continually being labled as " functional disorder " > Each > > one passes this to the next one, so I feel like I never get a fair > > shake. meanwhile my life is falling apart. I have just been > referred > > to my FIRST endocrinologist,after 16 years, Go figure. I hope you > can > > find a caring and helpful physician, Celia- > > > > - In , " tanya2727 " wrote: > > > I have a friend I meet through the MDA 2 yrs ago. She was on > this > > > site for a short time and had suspected mito. Well she had all > the > > > test we've had ,muscle biop and emg, mri. Her test was all neg. > > > > > > She went to Europe and had all test over and they showed mito > > > finally. But she said now that she's back she can't find a > doctor > > > to treat her. > > > > > > I had been doing somewhat ok for a few months, then in june > things > > > got bad again. I'm having the strokelike episodes alot and have > > > lasting weakness and slow thoughts at times. I have a headache > 24/7. > > > > > > Lets not talk about fatigue! My muscles are shaking all the > time. > > > There are so many other symptoms, but I'm on lots of meds for > most > > > alot of them, so I just try to cope everyday. > > > > > > Since the attacks have come back, I'm trying to continue with my > > > search for a DX. I went to the lab for blood work and the tech > told > > > me about a lady who came in all the time in a wheel chair. She > was > > > real sick and had been to many doctors. Well she found the > right > > > one who found out her problem and she went to a walker to cane > and > > > then walking on her own. > > > > > > I need to hear that so much today. It's getting harder to fight > and > > > search. > > > > > > Last weak I went to my 50th endocrinoligist. As soon as she > walked > > > in I knew she wasn't going to even try, and she didn't. I > wans't > > > feeling well so I cried after the visist in my car BUT, I > quickly > > > recovered. I getting much better at this :-). > > > > > > I know many of you are going through VERY rough times and You > will > > > be in my prayers. > > > > > > I will not give up, > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2004 Report Share Posted September 9, 2004 Hi, , I do understand how you feel. Twenty years of doctors not responding to what I tell them, or responding in a way that does not add up, or their just being plain insulting, has left me very very frustrated myself. I usually don''t let myself go there emotionally, because it is too destructive to me. Believe me the rage and frustration was strong. Personally, I gave up getting answers from docs a long time ago. Years and years ago I said to my husband - really these words - " I have a disease that they don't have a name for yet, so it seems pointless to put myself though more of the same stupid, insulting interviews. I need to wait until they at least have a name, then maybe they will get a treatment " I still went for routine things, like mamagrams, infections, checkups, etc. I gave each doc ONE crack at the other symptoms, and if they did not respond properly, I just wrote them off for my problems. And I had years and years of bad times. I am soooooo heartened to learn about mitochondrial disease, and to hear others here experience SOME of my symptoms. It makes me feel less alone, and gives me more hope. Also, I accidentally found a doc who at least recognizes mito as a disease. I am hopeful that as more is learned, he will keep up with it. I also decided a long time ago to try to follow good health habits - diet, exercise, hydration, anything that I could find that made sense TO ME. That also gave me some feeling of control. I am feeling better, in part I think, due to the mito cocktail and in part to exercise and in part to watching my carbs (I get hypoglycemic) , my symptoms are not as severe as yours. Extreme muscle weakness, mental cloudiness, and general fatigue are/were the main serious ones.(also touches of many others, that i just took for granted as part of my body) I have learned of the many other serious problems that people experience. I am totally empathetic to your frustration about getting medical care. It can be overwhelming. We need to be persistent. I am not sure what tests you had done, and by what kind of specialist. One thing I have learned is NOT to believe everything that every doctor has said to me. When what they say matches my experience, then I begin to believe. Check on all the tests you had, and see what more can be done. Try to find the right doctor for it, even if it means traveling. I do not have stroke-like episodes. Others here may be able to help you on that score. Don't give up. Be methodical, patient, read as much as possible, ask as many questions as possible. Read everything here, the UMDF site, the MDA site. Know that getting answers isn't simple, and that they may not always be what you want to hear, but believe that some may exist for you. It took me 2 years to believe that I had mito, and to learn enough about it, so that I feel I am in the right ball park. Now I feel more optimistic, thinking that I can make the best possible decisions for me. Having this site to learn from has also been so very helpful to me. In total, feeling that I have some control is very precious to me, and it makes me feel less frustrated. I wish you luck in your search. There are so many great people here. Benefit from their wisdom, knowledge, and support. Vent when you need to! Warm regards Sunny > --- > Hi Celia, > > I'm sooo glad to know you really understand because I just need to > hear that right now. > > I AM SOOOOOOO frustrated I don't know what the heck to do. I'm not > depressesd or angry. I'm just very frustrated. > > I have tried EVERYTHING to seach for an answer and I'm at a total > brick wall. I've seen every kind of doctor, been to every hospital > and had every test. > > There is ONLY one thing to do now and that's to go on TV and beg for > someone to help me. I've been e-mailing 1 station a day. Today I'm > going to call one. > > I know I have a strange problem and I really understand that, but > when I'm having a strokelike episode, and I have to pray not to die > I can't take that. I can't even go to the ER no matter how bad I > feel because they all know me and I know they won't find anything. > They treat me like crap in the er so I never go anymore now for > almost 2 years. > > I've been just trying to take this, but the last few episodes left > me with some lasting affects. I always get over everything, but > I'm having periods of drawing a blank when I talk and looking dazed. > > When I had a medium attack last week, my husband came in the room > and I couldn't speak to him for about a minute because I couldn't > procsess what he was saying to me. He said why are you staring at > me? > > Sooo I need help. I'm sick Of seeing new doctors because once I > tell them the story(even though I make it very short and simple now) > They can't deal with it and go into melt down. > > I really don't have anymore reason to go because I've have > everything done. > > What do I do? > > Sorry to go on, but i needed to just get it off my chest today. I > love my life, even the hard times, it has made me strong, but not > having the right medical help is scarry. > > Thanks laurie and alice for writing me back too. > > > > > > > > > > > > In , " cghng888 " wrote: > > -Oh , I'm sorry you are still having such a rough time- and > still > > undiagnosed. This is so me, you don;'t know how much I empathize > with > > you. It is just so frustrating dealing with these docs. What I find > > the hardest is continually being labled as " functional disorder " > Each > > one passes this to the next one, so I feel like I never get a fair > > shake. meanwhile my life is falling apart. I have just been > referred > > to my FIRST endocrinologist,after 16 years, Go figure. I hope you > can > > find a caring and helpful physician, Celia- > > > > - In , " tanya2727 " wrote: > > > I have a friend I meet through the MDA 2 yrs ago. She was on > this > > > site for a short time and had suspected mito. Well she had all > the > > > test we've had ,muscle biop and emg, mri. Her test was all neg. > > > > > > She went to Europe and had all test over and they showed mito > > > finally. But she said now that she's back she can't find a > doctor > > > to treat her. > > > > > > I had been doing somewhat ok for a few months, then in june > things > > > got bad again. I'm having the strokelike episodes alot and have > > > lasting weakness and slow thoughts at times. I have a headache > 24/7. > > > > > > Lets not talk about fatigue! My muscles are shaking all the > time. > > > There are so many other symptoms, but I'm on lots of meds for > most > > > alot of them, so I just try to cope everyday. > > > > > > Since the attacks have come back, I'm trying to continue with my > > > search for a DX. I went to the lab for blood work and the tech > told > > > me about a lady who came in all the time in a wheel chair. She > was > > > real sick and had been to many doctors. Well she found the > right > > > one who found out her problem and she went to a walker to cane > and > > > then walking on her own. > > > > > > I need to hear that so much today. It's getting harder to fight > and > > > search. > > > > > > Last weak I went to my 50th endocrinoligist. As soon as she > walked > > > in I knew she wasn't going to even try, and she didn't. I > wans't > > > feeling well so I cried after the visist in my car BUT, I > quickly > > > recovered. I getting much better at this :-). > > > > > > I know many of you are going through VERY rough times and You > will > > > be in my prayers. > > > > > > I will not give up, > > > > > > > > > > Medical advice, information, opinions, data and statements contained > herein are not necessarily those of the list moderators. The author of > this e mail is entirely responsible for its content. List members are > reminded of their responsibility to evaluate the content of the > postings and consult with their physicians regarding changes in their > own treatment. > > Personal attacks are not permitted on the list and anyone who sends > one is automatically moderated or removed depending on the severity of > the attack. > > > > > > Quote Link to comment Share on other sites More sharing options...
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