Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 , I was wondering what type of symptoms you had, which led them to do the biopsy on the liver. (Did they even suspect a mito disorder?) Maggie > > I could have sworn I read 6 months on the time between EMG and > > biopsy in the same area. Don't quote me on it though ! I like > > Laurie have had the full combination of poking and prodding in > just > > about every limb area. I know for my first needle biopsy they > > didn't have a problem doing it two weeks after my knee surgery in > > the thigh on the same side. I figured why be gimpy on both sides > > eh ? Ultimately, the fresh open muscle biopsy was the only way to > > dx the mito. > > > > bug > > > > 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 January 4, 2004 Report Share Posted January 4, 2004 Maggie, No, they did not suspect a mito disorder. In fact, I had a previous open liver biopsy that ruled out a mito disorder because there were NO ragged-red fibers. I guess that is all they looked for. My cells, themselves are very large, also. I have non-alcoholic steatorrea hepatitis, pancreatic enzyme insufficiency, colitis, spasms of my diaphragm, esophagus, trunk muscles, neck, face, eyes, (I saw a neurologist in San Francisco that writes textbooks on spasms and he said he has never seen spasms like I have), hypothyroidism, exercise intolerance...I can go on and on and on. I still don't have a name for this crystal thing. I did find out that this is very, very rare. I found two other cases on the internet that they know of. My husband says that I'm magical or I'm turning into an old radio. -- needle biopsy - ,I was wondering what type of symptoms you had, which led them to do the biopsy on the liver. (Did they even suspect a mito disorder?)Maggie > > I could have sworn I read 6 months on the time between EMG and > > biopsy in the same area. Don't quote me on it though ! I like > > Laurie have had the full combination of poking and prodding in > just > > about every limb area. I know for my first needle biopsy they > > didn't have a problem doing it two weeks after my knee surgery in > > the thigh on the same side. I figured why be gimpy on both sides > > eh ? Ultimately, the fresh open muscle biopsy was the only way to > > dx the mito.> > > > bug> > > > 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 January 4, 2004 Report Share Posted January 4, 2004 , Well, I'm sure you're just " magical " ... but you need to learn to use those powers to turn off those spasms.. lol. Must be frustrating find so few people with the same problem. Have you learned what the significance is of having " large cells " ? Maggie > Maggie, > > No, they did not suspect a mito disorder. In fact, I had a previous open > liver biopsy that ruled out a mito disorder because there were NO ragged-red > fibers. I guess that is all they looked for. My cells, themselves are very > large, also. I have non-alcoholic steatorrea hepatitis, pancreatic enzyme > insufficiency, colitis, spasms of my diaphragm, esophagus, trunk muscles, > neck, face, eyes, (I saw a neurologist in San Francisco that writes > textbooks on spasms and he said he has never seen spasms like I have), > hypothyroidism, exercise intolerance...I can go on and on and on. I still > don't have a name for this crystal thing. I did find out that this is very, > very rare. I found two other cases on the internet that they know of. My > husband says that I'm magical or I'm turning into an old radio. > > > > -------Original Message-------> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Very few people with mito have ragged red fibers. laurie > > Reply-To: > Date: Sun, 4 Jan 2004 22:17:54 -0800 (Pacific Standard Time) > To: < > > Subject: Re: needle biopsy - > > Maggie, > > > > No, they did not suspect a mito disorder. In fact, I had a previous open > liver biopsy that ruled out a mito disorder because there were NO ragged-red > fibers. I guess that is all they looked for. My cells, themselves are very > large, also. I have non-alcoholic steatorrea hepatitis, pancreatic enzyme > insufficiency, colitis, spasms of my diaphragm, esophagus, trunk muscles, > neck, face, eyes, (I saw a neurologist in San Francisco that writes > textbooks on spasms and he said he has never seen spasms like I have), > hypothyroidism, exercise intolerance...I can go on and on and on. I still > don't have a name for this crystal thing. I did find out that this is very, > very rare. I found two other cases on the internet that they know of. My > husband says that I'm magical or I'm turning into an old radio. > > > > > > > > -- needle biopsy - > > > > , > > I was wondering what type of symptoms you had, which led them to do > > the biopsy on the liver. (Did they even suspect a mito disorder?) > > > > Maggie > > > > > >>> I could have sworn I read 6 months on the time between EMG and > >>> biopsy in the same area. Don't quote me on it though ! I like > >>> Laurie have had the full combination of poking and prodding in > >> just > >>> about every limb area. I know for my first needle biopsy they > >>> didn't have a problem doing it two weeks after my knee surgery > > in > >>> the thigh on the same side. I figured why be gimpy on both sides > >>> eh ? Ultimately, the fresh open muscle biopsy was the only way > > to > >>> dx the mito. > >>> > >>> bug > >> > >> > >> > >> 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 January 5, 2004 Report Share Posted January 5, 2004 > Very few people with mito have ragged red fibers. > > laurie > > > No, they did not suspect a mito disorder. In fact, I had a previous open > > liver biopsy that ruled out a mito disorder because there were NO ragged-red > > fibers. I have Kearns/Sayre, which is identified by RRFs. It does seem that few of the mito diseases have RRFs. I've also noticed that my set of symptoms are different from a lot of people on the list. B Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 The MDA neurologist, out here, says that if you don't have ragged red fibers, then you don't have mito. Plus he said since the biopsy came from my liver, I don't have mito. - -- needle biopsy - > > > > ,> > I was wondering what type of symptoms you had, which led them to do> > the biopsy on the liver. (Did they even suspect a mito disorder?)> > > > Maggie > > > > > >>> I could have sworn I read 6 months on the time between EMG and> >>> biopsy in the same area. Don't quote me on it though ! I like> >>> Laurie have had the full combination of poking and prodding in> >> just > >>> about every limb area. I know for my first needle biopsy they> >>> didn't have a problem doing it two weeks after my knee surgery> > in > >>> the thigh on the same side. I figured why be gimpy on both sides> >>> eh ? Ultimately, the fresh open muscle biopsy was the only way> > to > >>> dx the mito.> >>> > >>> bug> >> > >> > >> > >> 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 January 5, 2004 Report Share Posted January 5, 2004 Maggie, I have no idea what the significance of large cells are. All I know that I have huge muscles that are extremely strong....only for a very little time. Do you know what it means? - -- Re: needle biopsy - ,Well, I'm sure you're just "magical" ... but you need to learn to use those powers to turn off those spasms.. lol.Must be frustrating find so few people with the same problem. Have you learned what the significance is of having "large cells"? Maggie> Maggie,> > No, they did not suspect a mito disorder. In fact, I had a previous open> liver biopsy that ruled out a mito disorder because there were NO ragged-red> fibers. I guess that is all they looked for. My cells, themselves are very> large, also. I have non-alcoholic steatorrea hepatitis, pancreatic enzyme> insufficiency, colitis, spasms of my diaphragm, esophagus, trunk muscles,> neck, face, eyes, (I saw a neurologist in San Francisco that writes> textbooks on spasms and he said he has never seen spasms like I have),> hypothyroidism, exercise intolerance...I can go on and on and on. I still> don't have a name for this crystal thing. I did find out that this is very,> very rare. I found two other cases on the internet that they know of. My> husband says that I'm magical or I'm turning into an old radio.> > > > -------Original Message-------> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 , No; sorry (I was hoping you knew!) Maggie > > Maggie, > > > > No, they did not suspect a mito disorder. In fact, I had a > previous open > > liver biopsy that ruled out a mito disorder because there were NO > ragged-red > > fibers. I guess that is all they looked for. My cells, > themselves are very > > large, also. I have non-alcoholic steatorrea hepatitis, > pancreatic enzyme > > insufficiency, colitis, spasms of my diaphragm, esophagus, trunk > muscles, > > neck, face, eyes, (I saw a neurologist in San Francisco that writes > > textbooks on spasms and he said he has never seen spasms like I > have), > > hypothyroidism, exercise intolerance...I can go on and on and on. > I still > > don't have a name for this crystal thing. I did find out that > this is very, > > very rare. I found two other cases on the internet that they know > of. My > > husband says that I'm magical or I'm turning into an old radio. > > > > > > > > -------Original Message-------> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2004 Report Share Posted January 6, 2004 It sounds like he knows very little about mito, unfortunately, some don't. Keep trying. Since mitochondria are in all cells of the body except red blood cells, it could indeed be dx'ed from the liver. That is my understanding. Kaspick wrote: The MDA neurologist, out here, says that if you don't have ragged red fibers, then you don't have mito. Plus he said since the biopsy came from my liver, I don't have mito. - -------Original Message------- From: Date: Monday, January 05, 2004 02:21:20 PM To: Subject: Re: needle biopsy - Very few people with mito have ragged red fibers. laurie > > Reply-To: > Date: Sun, 4 Jan 2004 22:17:54 -0800 (Pacific Standard Time) > To: < > > Subject: Re: needle biopsy - > > Maggie, > > > > No, they did not suspect a mito disorder. In fact, I had a previous open > liver biopsy that ruled out a mito disorder because there were NO ragged-red > fibers. I guess that is all they looked for. My cells, themselves are very > large, also. I have non-alcoholic steatorrea hepatitis, pancreatic enzyme > insufficiency, colitis, spasms of my diaphragm, esophagus, trunk muscles, > neck, face, eyes, (I saw a neurologist in San Francisco that writes > textbooks on spasms and he said he has never seen spasms like I have), > hypothyroidism, exercise intolerance...I can go on and on and on. I still > don't have a name for this crystal thing. I did find out that this is very, > very rare. I found two other cases on the internet that they know of. My > husband says that I'm magical or I'm turning into an old radio. > > > > > > > > -- needle biopsy - > > > > , > > I was wondering what type of symptoms you had, which led them to do > > the biopsy on the liver. (Did they even suspect a mito disorder?) > > > > Maggie > > > > > >>> I could have sworn I read 6 months on the time between EMG and > >>> biopsy in the same area. Don't quote me on it though ! I like > >>> Laurie have had the full combination of poking and prodding in > >> just > >>> about every limb area. I know for my first needle biopsy they > >>> didn't have a problem doing it two weeks after my knee surgery > > in > >>> the thigh on the same side. I figured why be gimpy on both sides > >>> eh ? Ultimately, the fresh open muscle biopsy was the only way > > to > >>> dx the mito. > >>> > >>> bug > >> > >> > >> > >> Medical advice, information, opinions, data and s! tatements > > 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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