Guest guest Posted September 10, 2004 Report Share Posted September 10, 2004 , I just wanted to let you know that I know how you feel. For so many years I thought I was the only person who was experiencing this kind of frustration. I know what it is like when they start explaining to you in their condesending tones. " there is nothing wrong with you " The last time I ended up in the emergency room, It's hard to refuse when you are in a coma(probably a stroke like episode) when the paramedics show up. I felt like screaming. But then I knew I couldn't because that would only reinforce in their minds that they were right and I was mental. They had an orderly sit with me. (I don't know what they thought I was going to do) He patiently explained to me that if I just had a positive attitude I would get better. I just sighed and turned my head away. He told me not to give up. I then went through my history. I told him of all the times that doctors had told me " nothing was wrong " and all the times I almost died because of it. What can they say to a patient who has a pacer she is totally dependent on) After that the doctor was at least kinder if not more helpful. The nurse on the other hand, was so rude. She refused to speak to my cardiologist when he called. She told my husband that she had " other patients to look after " She refused to help me. I had to go to the bathroom really bad. After I have an attack, I pass gallons of urine. She refused to help me. She pointed the rest room out to my husband and that was it. My husband had to drag me down the hallway since my legs didn't work. Everyone just stood around and watched me. My friends are astonished at me when I refuse to go to the emergency room when I get so very sick. But let me tell you I can do without their brand of TLC. Hang in there. You are not alone. Sunny is right. You just have write it off as ignorance and not let it get to you. Easier said than done I know. Hugs Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2004 Report Share Posted September 13, 2004 --- Hi celia, what is with all this vertigo? I used to call it the dizziness virus until I figured out that it is vertigo. I know now when I'm going to get it. I get alot of head pressure. I know I'm prone to sinus infections. When I get the head fullness and ear pain I know the vertigo is coming. I also sart to feel dizzy a week before. I've been able to fight off the vertigo some. You are soooooooooooooooooooo right about trying not to dwell on the past stuff of being undiagnosed and allthe bad treatment. I use it to propel me into seeking for answers. But sometimes I do need to vent some things. Since this first happened to me 13yrs ago next month, if I looked back over the 13yrs, I would never stop crying. I'm no longer hurt and angry about all this these days, but I'm very frustrated, but I'm trying to use this to get answers. I'm so glad you all understand all of these emotional strings that come with having this kind of illness. In , " cghng888 " wrote: > -I hear you guys. i was feeling pretty hopeless about myself too, all > those helath problems, all those docs, those few abnormal tests. Since > mito has been mentioned to me, and what test results I have, do seem > to fit into it- even with docs sort of proclaiming its s " functional " > problem with me, this site has given me hope. I too am trying the mito > cocktail and the advice about diet, hydration etc and it seems to be > helping. Also, i know what tests I should be having and and working on > that too. Like you , i hate to bring up a new problem to the doc, > or even to go in to be seen because I am so afraid she'll just think > it is one more " functinal " thing I am complaining about. in a way this > worries me, because maybe I should be seen, but I don;t want to cause > myself further aggrevation. like you say Sunny- bring up all the anger > and frustration. i try not to dwell on these. just had the most > horrendous attack of vertigo yet, gradually feeling better, but am > undiagnosed with that problem also. Have a good weekend everyone, Celia-- > > In , z39z@a... wrote: > > 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 13, 2004 Report Share Posted September 13, 2004 --- Hi celia, what is with all this vertigo? I used to call it the dizziness virus until I figured out that it is vertigo. I know now when I'm going to get it. I get alot of head pressure. I know I'm prone to sinus infections. When I get the head fullness and ear pain I know the vertigo is coming. I also sart to feel dizzy a week before. I've been able to fight off the vertigo some. You are soooooooooooooooooooo right about trying not to dwell on the past stuff of being undiagnosed and allthe bad treatment. I use it to propel me into seeking for answers. But sometimes I do need to vent some things. Since this first happened to me 13yrs ago next month, if I looked back over the 13yrs, I would never stop crying. I'm no longer hurt and angry about all this these days, but I'm very frustrated, but I'm trying to use this to get answers. I'm so glad you all understand all of these emotional strings that come with having this kind of illness. In , " cghng888 " wrote: > -I hear you guys. i was feeling pretty hopeless about myself too, all > those helath problems, all those docs, those few abnormal tests. Since > mito has been mentioned to me, and what test results I have, do seem > to fit into it- even with docs sort of proclaiming its s " functional " > problem with me, this site has given me hope. I too am trying the mito > cocktail and the advice about diet, hydration etc and it seems to be > helping. Also, i know what tests I should be having and and working on > that too. Like you , i hate to bring up a new problem to the doc, > or even to go in to be seen because I am so afraid she'll just think > it is one more " functinal " thing I am complaining about. in a way this > worries me, because maybe I should be seen, but I don;t want to cause > myself further aggrevation. like you say Sunny- bring up all the anger > and frustration. i try not to dwell on these. just had the most > horrendous attack of vertigo yet, gradually feeling better, but am > undiagnosed with that problem also. Have a good weekend everyone, Celia-- > > In , z39z@a... wrote: > > 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 13, 2004 Report Share Posted September 13, 2004 --- Hi celia, what is with all this vertigo? I used to call it the dizziness virus until I figured out that it is vertigo. I know now when I'm going to get it. I get alot of head pressure. I know I'm prone to sinus infections. When I get the head fullness and ear pain I know the vertigo is coming. I also sart to feel dizzy a week before. I've been able to fight off the vertigo some. You are soooooooooooooooooooo right about trying not to dwell on the past stuff of being undiagnosed and allthe bad treatment. I use it to propel me into seeking for answers. But sometimes I do need to vent some things. Since this first happened to me 13yrs ago next month, if I looked back over the 13yrs, I would never stop crying. I'm no longer hurt and angry about all this these days, but I'm very frustrated, but I'm trying to use this to get answers. I'm so glad you all understand all of these emotional strings that come with having this kind of illness. In , " cghng888 " wrote: > -I hear you guys. i was feeling pretty hopeless about myself too, all > those helath problems, all those docs, those few abnormal tests. Since > mito has been mentioned to me, and what test results I have, do seem > to fit into it- even with docs sort of proclaiming its s " functional " > problem with me, this site has given me hope. I too am trying the mito > cocktail and the advice about diet, hydration etc and it seems to be > helping. Also, i know what tests I should be having and and working on > that too. Like you , i hate to bring up a new problem to the doc, > or even to go in to be seen because I am so afraid she'll just think > it is one more " functinal " thing I am complaining about. in a way this > worries me, because maybe I should be seen, but I don;t want to cause > myself further aggrevation. like you say Sunny- bring up all the anger > and frustration. i try not to dwell on these. just had the most > horrendous attack of vertigo yet, gradually feeling better, but am > undiagnosed with that problem also. Have a good weekend everyone, Celia-- > > In , z39z@a... wrote: > > 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 13, 2004 Report Share Posted September 13, 2004 -Hi , Reading all these posts about all thee various problems, I have to admit it really is discouraging having my presentation of them suspect all the time. One of my main problems is that my new family doctor (who I sort of got by default- one moved and the next retired) suspects i somehow have some deep psychological problem (this dispite my two councellors of the past 11 years assuring her I was perfectily normal) and I suspect she writes as much to any doc she refers me too, hence I am behind the egg ball from the start. Sometimes i get afraid that certain problems are being ignored , or at least pushed under the mat, since no one seems able to put them together, or understand them .. I had a wonderrul internist for about 10 years and he was sooo helpful in coodinating everything, but now he's retired too and i haven't been able to find anyone to replace him. Thank heavens i have a great gastroenterologist, to look after the motility issues (although he isn't good at keeping in touch with PCPs- basicly can't be bothered, so my PCP is even doubting my GI problems, dispite seeing the GI doc so regularly...) Ah, well. When I get vertigo it just suddenly hits without any warning at all. Then it gradually wears off during the day. hope you are feeling well, celia -- In , " tanya2727 " wrote: > --- > Hi celia, > > what is with all this vertigo? I used to call it the dizziness virus > until I figured out that it is vertigo. I know now when I'm going > to get it. I get alot of head pressure. I know I'm prone to sinus > infections. When I get the head fullness and ear pain I know the > vertigo is coming. I also sart to feel dizzy a week before. I've > been able to fight off the vertigo some. > > You are soooooooooooooooooooo right about trying not to dwell on the > past stuff of being undiagnosed and allthe bad treatment. I use it > to propel me into seeking for answers. But sometimes I do need to > vent some things. Since this first happened to me 13yrs ago next > month, if I looked back over the 13yrs, I would never stop crying. > > I'm no longer hurt and angry about all this these days, but I'm very > frustrated, but I'm trying to use this to get answers. > > I'm so glad you all understand all of these emotional strings that > come with having this kind of illness. > > > > > > > In , " cghng888 " wrote: > > -I hear you guys. i was feeling pretty hopeless about myself too, > all > > those helath problems, all those docs, those few abnormal tests. > Since > > mito has been mentioned to me, and what test results I have, do > seem > > to fit into it- even with docs sort of proclaiming its > s " functional " > > problem with me, this site has given me hope. I too am trying the > mito > > cocktail and the advice about diet, hydration etc and it seems to > be > > helping. Also, i know what tests I should be having and and > working on > > that too. Like you , i hate to bring up a new problem to the > doc, > > or even to go in to be seen because I am so afraid she'll just > think > > it is one more " functinal " thing I am complaining about. in a way > this > > worries me, because maybe I should be seen, but I don;t want to > cause > > myself further aggrevation. like you say Sunny- bring up all the > anger > > and frustration. i try not to dwell on these. just had the most > > horrendous attack of vertigo yet, gradually feeling better, but am > > undiagnosed with that problem also. Have a good weekend everyone, > Celia-- > > > > In , z39z@a... wrote: > > > 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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