Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Thankyou and Betty for your support. I have not replyed because I have been in a crash . I have had several tests that I ahve had to fast for this past month. I think the cat scan dye just made it all worse. My body just wants to sleep. i feel like a toddler who desperately needs a nap and fights it. I don't want to rest, but my body will not allow anything else. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Hello A little background I am new here, and have been reading the posts, finding it difficult to know how to jump in. My difficulties are not as grave as many of yours. My main complaints (and I have many lesser ones too) are fatigue (including mental fatigue, which makes my cognitive abilities decline temporarily) and muscle weakness, specifically lack of endurance. (One example.... I cant comb the snarls out of my hair after washing it without my forearms getting very fatigued and painful. ). I am over 50 and have had this my whole life. Although I always knew that there was something " wrong " with me, I never could get it diagnosed. In younger years it was not serious enough to keep me from leading a " normal " life...I just needed a lot more effort and drive and determination, or so I thought. Many symptoms were ignored by physicians, or given responses which were irritating to me. You have all heard those, I am sure. In the past 20 years several auto accidents and major surgeries took their toll, and I became weaker. I limited my activities more, and planned carefully what I committed myself to, so that I would not crash. Finally, several years ago it got so bad that I went on the hunt again for a diagnosis. Like many of you, doctors are not my favorite people. (Meanwhile, for six years I had been on disease modifying drugs for rheumatoid arthritis....a disease I never felt I had because although my rheumatoid count was very high, my symptoms did not match what I read about rheumatoid arthritis. Stopping the drugs did not make my condition worse.) My lactic acid level is elevated. That is the only lab test that shows mito irregularities. My muscle biopsy (fresh, done in Buffalo, NY...by a supposed expert in the field) was fairly normal...slight irregularies, but not enough to interpret pathology, and my MRI is the same; a little something, but not enough to conclude anything. After reading the mito literature, I do feel that I have a mild variation of mito problems. There can be so many forms of it, I guess. I am experimenting with the mito coctail and trying to build up my strength by very careful, controlled weight lifting. I think the Q and the weight lifting have helped. I feel I am in the middle of a giant experiment, and dont know how it will come out yet. Several specific comments I have now 1) About the dye from the scan...... I had difficulty with dye also, way before mito was diagnosed. The radiologists now give me some steroids (I think 20 mg 12 hours before the procedure and 20 mg right before the procedure, but cant remember the details for sure) This is supposed to avoid an " allergic " reaction to the dye. I hate to take any prescription drug if I don't really need them. Just have not had that much luck with meds give to me, and I don't trust many of them for me. But, I always tell the radiologists that I had a bad reaction to the dye in the past, and get the steroids. Once (or less) a year, I figure that steroid wont hurt me. Not sure about that, but..... 2) About anesthesia/surgery..... I really feel that my general condition deteriorated a LOT, after each of 2 surgeries. I don't know if it was the anesthesia,( was really really sick in the recovery room each time, and was the last patient to be sent out) or other conditions of the surgeries (cervical spine and hysterectomy... both surgeries were routine, and should have not had recovery problems) I really took a LONG time to partially recover, and I feel I was never the same after the surgeries. They each just made the problems worse. I will certainly look at all alternatives before I have another general anethesia or surgery. 3) About exercise Anne, I was very glad to read your comments about exercise, in your note written to Janis's PT. (Couple weeks ago) I share so many of your experiences there, especially the low reps high weights (I use weights so that I fatigue at 10-12 reps per set.). I could NEVER complete any aerobic exercise class. But, I CAN do weight lifting, with a little rest in between sets. Also, my postural muscles were so weak that serious chronic back pain was a 24/7 fact. I am also working on core muscles now, and all my muscle gains have improved my posture, so that I am walking and sitting without slumping/slouching as much. Of course, this has got to help my fatigue, right? I mean, less effort in keeping upright must count for something. I think my 20-year old back pain is also diminishing. Too early to tell for sure. But, I enjoy seeing my muscles increase in mass, and having more strength for short term actions (like being able to open a heavy door, or lift a half gallon of milk from the back of the fridge). I will puzzle and ponder about endurace some other year. Although, my hope is that if I increase my mass and strength then maybe my endurace will increase a little also. By the way, one thing I learned for me.....I need to give myself plenty of recovery time. I only do each muscle group, as strenuously as I can...pushing really heavy weights for me, once a week. Need that time in between to recover. When I did it more frequently, I had NO progress. Also, for weeks I get muscle soreness for several days each time I do a new exercise, but finally that diminishes. And I have increased my (short term) strength dramatically. Have been doing this for a year now, experimenting on my own from reading the muscle magazines. I found the PT's too frustrating. They always wanted things a certain way, even if I told them I could not do it. I read, experiment, take notes, talk to the people at the gym, and find what works for me. I had to look on this as a hobby, and now I enjoy the whole experience of going to the gym. I would welcome any and all comments. And I promise not to make my posts so long in the future. LOL > Thankyou and Betty for your support. I have not replyed > because I have been in a crash . I have had several tests that I > ahve had to fast for this past month. I think the cat scan dye just > made it all worse. My body just wants to sleep. i feel like a > toddler who desperately needs a nap and fights it. I don't want to > rest, but my body will not allow anything else. > > Dawn > > > > 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 March 10, 2004 Report Share Posted March 10, 2004 --- It is nice to meet you. Thanks for the comment on the dye. I am going to have to mention it to my Dr in case I need furthur testing. I was not even told about the dye prior to the cat scan. Dawn In , z39z@a... wrote: > Hello > > A little background > I am new here, and have been reading the posts, finding it difficult to > know how to jump in. My difficulties are not as grave as many of > yours. My main complaints (and I have many lesser ones too) are > fatigue (including mental fatigue, which makes my cognitive abilities > decline temporarily) and muscle weakness, specifically lack of > endurance. (One example.... I cant comb the snarls out of my hair after > washing it without my forearms getting very fatigued and painful. ). I > am over 50 and have had this my whole life. Although I always knew > that there was something " wrong " with me, I never could get it > diagnosed. In younger years it was not serious enough to keep me from > leading a " normal " life...I just needed a lot more effort and drive and > determination, or so I thought. Many symptoms were ignored by > physicians, or given responses which were irritating to me. You have > all heard those, I am sure. In the past 20 years several auto > accidents and major surgeries took their toll, and I became weaker. I > limited my activities more, and planned carefully what I committed > myself to, so that I would not crash. Finally, several years ago it > got so bad that I went on the hunt again for a diagnosis. Like many of > you, doctors are not my favorite people. (Meanwhile, for six years I > had been on disease modifying drugs for rheumatoid arthritis....a > disease I never felt I had because although my rheumatoid count was > very high, my symptoms did not match what I read about rheumatoid > arthritis. Stopping the drugs did not make my condition worse.) > > My lactic acid level is elevated. That is the only lab test that shows > mito irregularities. My muscle biopsy (fresh, done in Buffalo, NY...by > a supposed expert in the field) was fairly normal...slight > irregularies, but not enough to interpret pathology, and my MRI is the > same; a little something, but not enough to conclude anything. After > reading the mito literature, I do feel that I have a mild variation of > mito problems. There can be so many forms of it, I guess. I am > experimenting with the mito coctail and trying to build up my strength > by very careful, controlled weight lifting. I think the Q and the > weight lifting have helped. I feel I am in the middle of a giant > experiment, and dont know how it will come out yet. > > Several specific comments I have now > > 1) About the dye from the scan...... > I had difficulty with dye also, way before mito was diagnosed. The > radiologists now give me some steroids (I think 20 mg 12 hours before > the procedure and 20 mg right before the procedure, but cant remember > the details for sure) This is supposed to avoid an " allergic " reaction > to the dye. I hate to take any prescription drug if I don't really > need them. Just have not had that much luck with meds give to me, and > I don't trust many of them for me. But, I always tell the radiologists > that I had a bad reaction to the dye in the past, and get the steroids. > Once (or less) a year, I figure that steroid wont hurt me. Not sure > about that, but..... > > > 2) About anesthesia/surgery..... > I really feel that my general condition deteriorated a LOT, after each > of 2 surgeries. I don't know if it was the anesthesia,( was really > really sick in the recovery room each time, and was the last patient to > be sent out) or other conditions of the surgeries (cervical spine and > hysterectomy... both surgeries were routine, and should have not had > recovery problems) I really took a LONG time to partially recover, and > I feel I was never the same after the surgeries. They each just made > the problems worse. I will certainly look at all alternatives before > I have another general anethesia or surgery. > > 3) About exercise > Anne, I was very glad to read your comments about exercise, in your > note written to Janis's PT. (Couple weeks ago) I share so many of > your experiences there, especially the low reps high weights (I use > weights so that I fatigue at 10-12 reps per set.). I could NEVER > complete any aerobic exercise class. But, I CAN do weight lifting, > with a little rest in between sets. Also, my postural muscles were so > weak that serious chronic back pain was a 24/7 fact. I am also > working on core muscles now, and all my muscle gains have improved my > posture, so that I am walking and sitting without slumping/slouching > as much. Of course, this has got to help my fatigue, right? I mean, > less effort in keeping upright must count for something. I think my > 20-year old back pain is also diminishing. Too early to tell for sure. > But, I enjoy seeing my muscles increase in mass, and having more > strength for short term actions (like being able to open a heavy door, > or lift a half gallon of milk from the back of the fridge). I will > puzzle and ponder about endurace some other year. Although, my hope is > that if I increase my mass and strength then maybe my endurace will > increase a little also. > By the way, one thing I learned for me.....I need to give myself plenty > of recovery time. I only do each muscle group, as strenuously as I > can...pushing really heavy weights for me, once a week. Need that time > in between to recover. When I did it more frequently, I had NO > progress. Also, for weeks I get muscle soreness for several days each > time I do a new exercise, but finally that diminishes. And I have > increased my (short term) strength dramatically. Have been doing this > for a year now, experimenting on my own from reading the muscle > magazines. I found the PT's too frustrating. They always wanted > things a certain way, even if I told them I could not do it. I read, > experiment, take notes, talk to the people at the gym, and find what > works for me. I had to look on this as a hobby, and now I enjoy the > whole experience of going to the gym. > > > I would welcome any and all comments. And I promise not to make my > posts so long in the future. LOL > > > > > Thankyou and Betty for your support. I have not replyed > > because I have been in a crash . I have had several tests that I > > ahve had to fast for this past month. I think the cat scan dye just > > made it all worse. My body just wants to sleep. i feel like a > > toddler who desperately needs a nap and fights it. I don't want to > > rest, but my body will not allow anything else. > > > > Dawn > > > > > > > > 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 March 10, 2004 Report Share Posted March 10, 2004 Dawn, Yes, the dye is sprung on us the first time. As far as I know, serious allergic reactions (they are very rare they say) can happen to the dye, and that is why they gave me the steroids. I am not sure that I had an allergic reaction, I was just not right, and didn't want to take any chances. > --- It is nice to meet you. Thanks for the comment on the dye. I am > going to have to mention it to my Dr in case I need furthur > testing. I was not even told about the dye prior to the cat scan. > > Dawn > > > > In , z39z@a... wrote: > > Hello > > > > A little background > > I am new here, and have been reading the posts, finding it > difficult to > > know how to jump in. My difficulties are not as grave as many of > > yours. My main complaints (and I have many lesser ones too) are > > fatigue (including mental fatigue, which makes my cognitive > abilities > > decline temporarily) and muscle weakness, specifically lack of > > endurance. (One example.... I cant comb the snarls out of my hair > after > > washing it without my forearms getting very fatigued and > painful. ). I > > am over 50 and have had this my whole life. Although I always > knew > > that there was something " wrong " with me, I never could get it > > diagnosed. In younger years it was not serious enough to keep me > from > > leading a " normal " life...I just needed a lot more effort and > drive and > > determination, or so I thought. Many symptoms were ignored by > > physicians, or given responses which were irritating to me. You > have > > all heard those, I am sure. In the past 20 years several auto > > accidents and major surgeries took their toll, and I became > weaker. I > > limited my activities more, and planned carefully what I committed > > myself to, so that I would not crash. Finally, several years ago > it > > got so bad that I went on the hunt again for a diagnosis. Like > many of > > you, doctors are not my favorite people. (Meanwhile, for six years > I > > had been on disease modifying drugs for rheumatoid arthritis....a > > disease I never felt I had because although my rheumatoid count > was > > very high, my symptoms did not match what I read about rheumatoid > > arthritis. Stopping the drugs did not make my condition worse.) > > > > My lactic acid level is elevated. That is the only lab test that > shows > > mito irregularities. My muscle biopsy (fresh, done in Buffalo, > NY...by > > a supposed expert in the field) was fairly normal...slight > > irregularies, but not enough to interpret pathology, and my MRI is > the > > same; a little something, but not enough to conclude anything. > After > > reading the mito literature, I do feel that I have a mild > variation of > > mito problems. There can be so many forms of it, I guess. I am > > experimenting with the mito coctail and trying to build up my > strength > > by very careful, controlled weight lifting. I think the Q and the > > weight lifting have helped. I feel I am in the middle of a giant > > experiment, and dont know how it will come out yet. > > > >  Several specific comments I have now > > > > 1) About the dye from the scan...... > > I had difficulty with dye also, way before mito was diagnosed. > The > > radiologists now give me some steroids (I think 20 mg 12 hours > before > > the procedure and 20 mg right before the procedure, but cant > remember > > the details for sure) This is supposed to avoid an " allergic " > reaction > > to the dye.  I hate to take any prescription drug if I don't > really > > need them. Just have not had that much luck with meds give to me, > and  > > I don't trust many of them for me. But, I always tell the > radiologists > > that I had a bad reaction to the dye in the past, and get the > steroids. > >  Once (or less) a year, I figure that steroid wont hurt me. Not > sure > > about that, but..... > > > > > > 2) About anesthesia/surgery..... > > I really feel that my general condition deteriorated a LOT, after > each > > of 2 surgeries. I don't know if it was the anesthesia,( was > really > > really sick in the recovery room each time, and was the last > patient to > > be sent out) or other conditions of the surgeries (cervical spine > and > > hysterectomy... both surgeries were routine, and should have not > had > > recovery problems) I really took a LONG time to partially > recover, and > > I feel I was never the same after the surgeries. They each just > made > > the problems worse. I will certainly look at all alternatives > before > > I have another general anethesia or surgery. > > > > 3) About exercise > > Anne, I was very glad to read your comments about exercise, in > your > > note written to Janis's PT. (Couple weeks ago) I share so many > of > > your experiences there, especially the low reps high weights (I > use > > weights so that I fatigue at 10-12 reps per set.). I could NEVER > > complete any aerobic exercise class. But, I CAN do weight > lifting, > > with a little rest in between sets. Also, my postural muscles > were so > > weak that serious chronic back pain was a 24/7 fact. I am also > > working on core muscles now, and all my muscle gains have > improved my > > posture, so that I am walking and sitting without > slumping/slouching > > as much. Of course, this has got to help my fatigue, right? I > mean, > > less effort in keeping upright must count for something. I think > my > > 20-year old back pain is also diminishing. Too early to tell for > sure. > >  But, I enjoy seeing my muscles increase in mass, and having more > > strength for short term actions (like being able to open a heavy > door, > > or lift a half gallon of milk from the back of the fridge). I > will > > puzzle and ponder about endurace some other year. Although, my > hope is > > that if I increase my mass and strength then maybe my endurace > will > > increase a little also. > > By the way, one thing I learned for me.....I need to give myself > plenty > > of recovery time. I only do each muscle group, as strenuously as I > > can...pushing really heavy weights for me, once a week. Need that > time > > in between to recover. When I did it more frequently, I had NO > > progress. Also, for weeks I get muscle soreness for several days > each > > time I do a new exercise, but finally that diminishes. And I > have > > increased my (short term) strength dramatically. Have been doing > this > > for a year now, experimenting on my own from reading the muscle > > magazines. I found the PT's too frustrating. They always wanted > > things a certain way, even if I told them I could not do it. I > read, > > experiment, take notes, talk to the people at the gym, and find > what > > works for me. I had to look on this as a hobby, and now I enjoy > the > > whole experience of going to the gym. > > > > > > I would welcome any and all comments. And I promise not to make > my > > posts so long in the future. LOL > > > > > > > > > Thankyou and Betty for your support. I have not replyed > > > because I have been in a crash . I have had several tests that I > > > ahve had to fast for this past month. I think the cat scan dye > just > > > made it all worse. My body just wants to sleep. i feel like a > > > toddler who desperately needs a nap and fights it. I don't want > to > > > rest, but my body will not allow anything else. > > > > > > Dawn > > > > > > > > > > > > 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 March 10, 2004 Report Share Posted March 10, 2004 Dawn Welcome to posting on the group. You need to listen to your body when it says sleep. I have to do that even when I have a million other things to do. I have found that if I don't listen to my body, then I just get worse. laurie > From: z39z@... > Reply-To: > Date: Wed, 10 Mar 2004 14:59:24 -0500 > To: > Subject: Re: Cat Scan with dye > > Hello > > A little background > I am new here, and have been reading the posts, finding it difficult to > know how to jump in. My difficulties are not as grave as many of > yours. My main complaints (and I have many lesser ones too) are > fatigue (including mental fatigue, which makes my cognitive abilities > decline temporarily) and muscle weakness, specifically lack of > endurance. (One example.... I cant comb the snarls out of my hair after > washing it without my forearms getting very fatigued and painful. ). I > am over 50 and have had this my whole life. Although I always knew > that there was something " wrong " with me, I never could get it > diagnosed. In younger years it was not serious enough to keep me from > leading a " normal " life...I just needed a lot more effort and drive and > determination, or so I thought. Many symptoms were ignored by > physicians, or given responses which were irritating to me. You have > all heard those, I am sure. In the past 20 years several auto > accidents and major surgeries took their toll, and I became weaker. I > limited my activities more, and planned carefully what I committed > myself to, so that I would not crash. Finally, several years ago it > got so bad that I went on the hunt again for a diagnosis. Like many of > you, doctors are not my favorite people. (Meanwhile, for six years I > had been on disease modifying drugs for rheumatoid arthritis....a > disease I never felt I had because although my rheumatoid count was > very high, my symptoms did not match what I read about rheumatoid > arthritis. Stopping the drugs did not make my condition worse.) > > My lactic acid level is elevated. That is the only lab test that shows > mito irregularities. My muscle biopsy (fresh, done in Buffalo, NY...by > a supposed expert in the field) was fairly normal...slight > irregularies, but not enough to interpret pathology, and my MRI is the > same; a little something, but not enough to conclude anything. After > reading the mito literature, I do feel that I have a mild variation of > mito problems. There can be so many forms of it, I guess. I am > experimenting with the mito coctail and trying to build up my strength > by very careful, controlled weight lifting. I think the Q and the > weight lifting have helped. I feel I am in the middle of a giant > experiment, and dont know how it will come out yet. > > Several specific comments I have now > > 1) About the dye from the scan...... > I had difficulty with dye also, way before mito was diagnosed. The > radiologists now give me some steroids (I think 20 mg 12 hours before > the procedure and 20 mg right before the procedure, but cant remember > the details for sure) This is supposed to avoid an " allergic " reaction > to the dye. I hate to take any prescription drug if I don't really > need them. Just have not had that much luck with meds give to me, and > I don't trust many of them for me. But, I always tell the radiologists > that I had a bad reaction to the dye in the past, and get the steroids. > Once (or less) a year, I figure that steroid wont hurt me. Not sure > about that, but..... > > > 2) About anesthesia/surgery..... > I really feel that my general condition deteriorated a LOT, after each > of 2 surgeries. I don't know if it was the anesthesia,( was really > really sick in the recovery room each time, and was the last patient to > be sent out) or other conditions of the surgeries (cervical spine and > hysterectomy... both surgeries were routine, and should have not had > recovery problems) I really took a LONG time to partially recover, and > I feel I was never the same after the surgeries. They each just made > the problems worse. I will certainly look at all alternatives before > I have another general anethesia or surgery. > > 3) About exercise > Anne, I was very glad to read your comments about exercise, in your > note written to Janis's PT. (Couple weeks ago) I share so many of > your experiences there, especially the low reps high weights (I use > weights so that I fatigue at 10-12 reps per set.). I could NEVER > complete any aerobic exercise class. But, I CAN do weight lifting, > with a little rest in between sets. Also, my postural muscles were so > weak that serious chronic back pain was a 24/7 fact. I am also > working on core muscles now, and all my muscle gains have improved my > posture, so that I am walking and sitting without slumping/slouching > as much. Of course, this has got to help my fatigue, right? I mean, > less effort in keeping upright must count for something. I think my > 20-year old back pain is also diminishing. Too early to tell for sure. > But, I enjoy seeing my muscles increase in mass, and having more > strength for short term actions (like being able to open a heavy door, > or lift a half gallon of milk from the back of the fridge). I will > puzzle and ponder about endurace some other year. Although, my hope is > that if I increase my mass and strength then maybe my endurace will > increase a little also. > By the way, one thing I learned for me.....I need to give myself plenty > of recovery time. I only do each muscle group, as strenuously as I > can...pushing really heavy weights for me, once a week. Need that time > in between to recover. When I did it more frequently, I had NO > progress. Also, for weeks I get muscle soreness for several days each > time I do a new exercise, but finally that diminishes. And I have > increased my (short term) strength dramatically. Have been doing this > for a year now, experimenting on my own from reading the muscle > magazines. I found the PT's too frustrating. They always wanted > things a certain way, even if I told them I could not do it. I read, > experiment, take notes, talk to the people at the gym, and find what > works for me. I had to look on this as a hobby, and now I enjoy the > whole experience of going to the gym. > > > I would welcome any and all comments. And I promise not to make my > posts so long in the future. LOL > > > >> Thankyou and Betty for your support. I have not replyed >> because I have been in a crash . I have had several tests that I >> ahve had to fast for this past month. I think the cat scan dye just >> made it all worse. My body just wants to sleep. i feel like a >> toddler who desperately needs a nap and fights it. I don't want to >> rest, but my body will not allow anything else. >> >> Dawn >> >> >> >> 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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