Guest guest Posted June 25, 2005 Report Share Posted June 25, 2005 Kim I'm sorry you hit another road block. I had several frozen biopsies that were inconcusive. I was diagnosed without any complex I activity on a fresh biopsy. laurie > Well, after waiting 6 months it appears that my second muscle biopsy > was inconclusive. They did feel they could rule out the dozen or so > most likely metabolic diseases. The biopsy's weren't fresh though, so > I may have to consider Atlanta or Cleveland. Are there any good docs > still taking patients at Cleveland? > The doc here is still baffled why I get red urine, and I have a build > up of pyruvate in my blood and muscle. > I had another stroke like episode three weeks ago. I didn't go in > though. I guess it seems senseless. Nobody seems to be able to > figure out what I have. > I'm not sure what to do next. > Kim > > > > > 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 June 25, 2005 Report Share Posted June 25, 2005 May I ask how you were diagnosed? I was wondering if there was a blood test once it was looking more like mito. I really don't want to have to go out of state to another doc. Kim > > Well, after waiting 6 months it appears that my second muscle biopsy > > was inconclusive. They did feel they could rule out the dozen or so > > most likely metabolic diseases. The biopsy's weren't fresh though, so > > I may have to consider Atlanta or Cleveland. Are there any good docs > > still taking patients at Cleveland? > > The doc here is still baffled why I get red urine, and I have a build > > up of pyruvate in my blood and muscle. > > I had another stroke like episode three weeks ago. I didn't go in > > though. I guess it seems senseless. Nobody seems to be able to > > figure out what I have. > > I'm not sure what to do next. > > Kim > > > > > > > > > > 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 June 27, 2005 Report Share Posted June 27, 2005 Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Hi Kim, And also remember that quite a few people have had fresh muscle biopsies done by Dr. Schoffner and they came back Negative, and he totally goes by what the biopsy says. But yet their Mito docs still feel and believe that they do indeed have Mito. So it is possible that you can end up with a Negative result for your Muscle biopsy and still have Mito. So confusing....isn't it?? Hugs, Ann-Marie At 03:02 PM 6/27/2005, you wrote: >To: > >Subject: Re: Inconclusive biopsy > >Thanks Joanne, >It looks like I'll be able to get in with Dr. Schoffner, so I should >probably go with it. They called me a couple weeks ago trying to >get the rest of my records so they could schedule me. It's a long >ways, but the testing would be over with afterwards. That sounds >good to me. If I don't have mito, then my primary says it's >fibromyalgia. >Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 This is because he considers 5% activity or less in a complex to be a dx of mito and other docs consider other % to be indicative of mito. At least I believe this is how it was when my sister Laurie saw Dr. Shoffner in 1997. Things could have changed a lot since then though. Ann-Marie Mc wrote: >Hi Kim, > >And also remember that quite a few people have had fresh muscle biopsies >done by Dr. Schoffner and they came back Negative, and he totally goes by >what the biopsy says. >But yet their Mito docs still feel and believe that they do indeed have Mito. > >So it is possible that you can end up with a Negative result for your >Muscle biopsy and still have Mito. > >So confusing....isn't it?? > >Hugs, >Ann-Marie > > > > >At 03:02 PM 6/27/2005, you wrote: > > >>To: >> >>Subject: Re: Inconclusive biopsy >> >>Thanks Joanne, >>It looks like I'll be able to get in with Dr. Schoffner, so I should >>probably go with it. They called me a couple weeks ago trying to >>get the rest of my records so they could schedule me. It's a long >>ways, but the testing would be over with afterwards. That sounds >>good to me. If I don't have mito, then my primary says it's >>fibromyalgia. >>Kim >> >> > > > > >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 June 27, 2005 Report Share Posted June 27, 2005 Ok, ya I'm totally confused now. Isn't Schoffner a mito doc? How can it be negative and still have mito? Are there any mito docs in/near Illinois? My primary doc says to go with the muscle, not skin biopsy. Kim > >To: > >From: " klaga5 " > >Subject: Re: Inconclusive biopsy > > > >Thanks Joanne, > >It looks like I'll be able to get in with Dr. Schoffner, so I should > >probably go with it. They called me a couple weeks ago trying to > >get the rest of my records so they could schedule me. It's a long > >ways, but the testing would be over with afterwards. That sounds > >good to me. If I don't have mito, then my primary says it's > >fibromyalgia. > >Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 One comment here: I'm pretty sure, Dr. Shoffner will not agree to evaluate a patietn until he has reviewed all of the available medical records and feels reasonably certain that mitochondrial disease is one of the differential diagnosis and a fresh biopsy is clinically indicated. Over the past 7-8 years I can think of very, very few people that have traveled for biopsy and either haven't proceeded or have received a negative diagnosis. At least two of those, he did give them a diagnosis, but on biopsy findings determined that hey had another neuromuscular disease. dgregori@...> wrote:This is because he considers 5% activity or less in a complex to be a dx of mito and other docs consider other % to be indicative of mito. At least I believe this is how it was when my sister Laurie saw Dr. Shoffner in 1997. Things could have changed a lot since then though. Ann-Marie Mc wrote: >Hi Kim, > >And also remember that quite a few people have had fresh muscle biopsies >done by Dr. Schoffner and they came back Negative, and he totally goes by >what the biopsy says. >But yet their Mito docs still feel and believe that they do indeed have Mito. > >So it is possible that you can end up with a Negative result for your >Muscle biopsy and still have Mito. > >So confusing....isn't it?? > >Hugs, >Ann-Marie > > > > >At 03:02 PM 6/27/2005, you wrote: > > >>To: >> >>Subject: Re: Inconclusive biopsy >> >>Thanks Joanne, >>It looks like I'll be able to get in with Dr. Schoffner, so I should >>probably go with it. They called me a couple weeks ago trying to >>get the rest of my records so they could schedule me. It's a long >>ways, but the testing would be over with afterwards. That sounds >>good to me. If I don't have mito, then my primary says it's >>fibromyalgia. >>Kim >> >> > > > > >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 June 27, 2005 Report Share Posted June 27, 2005 In a message dated 6/27/2005 6:30:57 PM Eastern Standard Time, servedogmom@... writes: Over the past 7-8 years I can think of very, very few people that have traveled for biopsy and either haven't proceeded or have received a negative diagnosis. At least two of those, he did give them a diagnosis, but on biopsy findings determined that hey had another neuromuscular disease. Kim and others, I went to Atlanta to see Dr Shoffner a few years ago and came back with a negative muscle biopsy. But, I see a mito doctor in Boston who has several hundred patients with mito and is very convinced that I still have mitochondrial disease. Just on this last visit up to see him, I ran into 2 other people with the same scenario. Since many of my primary symptoms are in my gut and autonomic system, he said that we may have gotten different results if it was possible to biopsy those organs. The reason for this is heteroplasmy which basically means that different organs can have different amounts of defective mitochondria. If they biopsy an area which a high percentage of bad mitochondria, it's more likely that the person will have a positive biopsy. Consequently, if they biopsy an area with more good mitochondria, the biopsy may appear normal. My bloodwork however, shows multiple signs of mitochondrial disease, including high alanine, high 3 methylglutaconic acid, abnormal acylcarnitines, low CoQ10, high lactate with acute illness, etc. But, some people with proven mito still can have normal labwork, especially when they're not acutely ill. So confusing, but basically it seems like there really is no one single test to rule out mito. There are tests to rule it in and diagnose it, but no one test to rule it out. My mito doctor says that he often will give a clinical diagnosis of mito based on clinical symptoms, labwork abnormalities, muscle biopsy results, and family history. He said you have to build a case for mito and base the diagnosis on the entire picture of what's going on. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Joanne, you had mentioned Dr. Peltier to me as well and said that she could be covered by OSF. i found that both Dr. Whiteman and Dr. Shields are on with CCN who does out of network for OSF, but Dr. Peltier isn't listed. any ideas why she isn't and these other two are? kent > There are NO competent mito docs in Illinois. If there were we would not travel outof State with my daughters for care. The only places in the to get a fresh muscle biopsy in the US are Cleveland and Atlanta (my girls have had biopsies at both). Once diagnosed the challenge is finding a competent physician for treatment (one who is knowledgeable and supports the diagnosis). In that regard, Dr. Peltier at Froedtert inMilwaukee is supposed to be quite good. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 In a message dated 6/27/2005 6:15:30 PM Eastern Standard Time, klaga5@... writes: Isn't Schoffner a mito doc? How can it be negative and still have mito? Are there any mito docs in/near Illinois? Hi Kim, As others have said, Dr Shoffner is probably one of the best doctors to go to for a fresh muscle biopsy. Even though my biopsy was normal, I wouldn't have gone anywhere else. Dr Shoffner primarily diagnoses patients and doesn't typically follow them, so wouldn't be able to follow you overtime. However, there are other doctors who specialize in mito diseases who would be able to follow you from a distance and communicate with your primary care physician at home. I see Dr Korson in Boston every 3 months but live in Philadelphia. Dr K has been instrumental in guiding my doctors at home regarding how to treat me and be proactive with my care. Before seeing Dr Korson, my doctors at home didn't believe I had mito and had no clue what to do to help me. Even if you have to go out of state, it's worth the trip if one of the mito doctors can help you. Some will only have you follow up once a year but will work closely with your doctors to manage you from a distance. Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Kim, i am in central il and am finding how tough it is to find specialists nearby. kent > I hope there's someone closer than that. > Kim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 That's interesting. I suppose with red urine, and elevated pyruvate in my blood, and in my muscle, it's not too difficult to assume that something's wrong with my muscles. Thanks for sharing that. It gives me hope that it's worth traveling down there. Kim > > > > > >>To: > >>From: " klaga5 " > >>Subject: Re: Inconclusive biopsy > >> > >>Thanks Joanne, > >>It looks like I'll be able to get in with Dr. Schoffner, so I should > >>probably go with it. They called me a couple weeks ago trying to > >>get the rest of my records so they could schedule me. It's a long > >>ways, but the testing would be over with afterwards. That sounds > >>good to me. If I don't have mito, then my primary says it's > >>fibromyalgia. > >>Kim > >> > >> > > > > > > > > > >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 June 27, 2005 Report Share Posted June 27, 2005 Hi neighbor. Who do you go to then? Are you diagnosed. Sorry...crumby memory. Kim > > I hope there's someone closer than that. > > Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 That sounds good Kim. I hope everything goes well for you down in Atlanta. It is a long way. I am in California and it is even longer for me, but I would be willing to make the trip if I thought I could get some answers. Atlanta has been very nice to work with. The little bit I have done so far. They seem very nice. Joanne _____ From: [mailto: ] On Behalf Of klaga5 Sent: Monday, June 27, 2005 12:03 PM To: Subject: Re: Inconclusive biopsy Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne 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 June 27, 2005 Report Share Posted June 27, 2005 Hi , Do you know what the percentages are that other doctors consider to be indicative of Mito or a dx of mito? Just curious if all doctors are following the same technical requirements. Thanks Ann-Marie At 04:53 PM 6/27/2005, you wrote: >To: > >Subject: Re: Re: Inconclusive biopsy > >This is because he considers 5% activity or less in a complex to be a dx >of mito and other docs consider other % to be indicative of mito. At >least I believe this is how it was when my sister Laurie saw Dr. >Shoffner in 1997. Things could have changed a lot since then though. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Hi I agree with you that Dr. Schoffner wouldn't agree to see or evaluate a patient unless he felt that he was quite sure that Mitochondrial disease was a possibility. I can name more than a few that got Negative fresh biopsy results but of course I can't identify them publically. And their Mito docs who are treating them and caring for them are 100% sure that they have Mito. It is just like some of the lab work that is done for Mito, sometimes it is negative but that doesn't mean you don't have Mito. I would say the same can be true for muscle biopsies. Only thing I was trying to say was that she may end up with a negative result on her muscle biopsy but that doesn't mean she doesn't have the disease. Ann-Marie At 06:30 PM 6/27/2005, you wrote: >To: > >Subject: Re: Re: Inconclusive biopsy > >One comment here: I'm pretty sure, Dr. Shoffner will not agree to >evaluate a patietn until he has reviewed all of the available medical >records and feels reasonably certain that mitochondrial disease is one of >the differential diagnosis and a fresh biopsy is clinically >indicated. Over the past 7-8 years I can think of very, very few people >that have traveled for biopsy and either haven't proceeded or have >received a negative diagnosis. At least two of those, he did give them a >diagnosis, but on biopsy findings determined that hey had another >neuromuscular disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2005 Report Share Posted June 27, 2005 Joanne if I may ask, where in California do you live? It has been a good many years since I lived in the San Diego area but at that time Scripps Institute was highly recommended. Off the top of my head I can't think of any other place at the moment. I know how you feel I am stuck in Kansas and getting anywhere is a major problem for me as I am age 69 and pretty much all alone. Dolores Crook pjcrook@...> wrote:That sounds good Kim. I hope everything goes well for you down in Atlanta. It is a long way. I am in California and it is even longer for me, but I would be willing to make the trip if I thought I could get some answers. Atlanta has been very nice to work with. The little bit I have done so far. They seem very nice. Joanne _____ From: [mailto: ] On Behalf Of klaga5 Sent: Monday, June 27, 2005 12:03 PM To: Subject: Re: Inconclusive biopsy Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne 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 June 28, 2005 Report Share Posted June 28, 2005 I know in 97' and 99' they weren't and I doubt they are today either. That is one of the many many many difficulties with this disease. Even the experts, few that they are, don't agree on the even the diagnostic criteria that says " mito " ! Ann-Marie Mc wrote: >Hi , > >Do you know what the percentages are that other doctors consider to be >indicative of Mito or a dx of mito? > >Just curious if all doctors are following the same technical requirements. >Thanks >Ann-Marie > > > > > >At 04:53 PM 6/27/2005, you wrote: > > >>To: >> >>Subject: Re: Re: Inconclusive biopsy >> >>This is because he considers 5% activity or less in a complex to be a dx >>of mito and other docs consider other % to be indicative of mito. At >>least I believe this is how it was when my sister Laurie saw Dr. >>Shoffner in 1997. Things could have changed a lot since then though. >> >> >> >> > > > > >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 June 28, 2005 Report Share Posted June 28, 2005 This is true. At one point several years ago, UMDF had set up a committee of experts from their scientific advisory board to develop standard diagnostic criteria and lab tests/results that everyone could agree on. I know Dr. Naviaux and Dr. Vladutiu were involved in this as well as others. Have not heard recently if they are progressing or what, if anything, came out of this committee. Barbara _____ From: [mailto: ] On Behalf Of Sent: Tuesday, June 28, 2005 5:26 AM To: Subject: Re: Re: Inconclusive biopsy I know in 97' and 99' they weren't and I doubt they are today either. That is one of the many many many difficulties with this disease. Even the experts, few that they are, don't agree on the even the diagnostic criteria that says " mito " ! Ann-Marie Mc wrote: >Hi , > >Do you know what the percentages are that other doctors consider to be >indicative of Mito or a dx of mito? > >Just curious if all doctors are following the same technical requirements. >Thanks >Ann-Marie > > > > > >At 04:53 PM 6/27/2005, you wrote: > > >>To: >> >>Subject: Re: Re: Inconclusive biopsy >> >>This is because he considers 5% activity or less in a complex to be a dx >>of mito and other docs consider other % to be indicative of mito. At >>least I believe this is how it was when my sister Laurie saw Dr. >>Shoffner in 1997. Things could have changed a lot since then though. >> >> >> >> > > > > >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 June 28, 2005 Report Share Posted June 28, 2005 Hi Dolores, I live in northern California; Santa to be exact. It is about an hour north of San Francisco. The closest places for me are the University of California San Francisco, and Stanford. I have been to both places. Dr Enns is at Stanford. I think he is more of a researcher than a clinical dr. Of course most Mito docs are. You are right it is pretty lonely. Thank goodness for my on-line friends! Joanne _____ From: [mailto: ] On Behalf Of Dolores Sent: Monday, June 27, 2005 7:24 PM To: Subject: RE: Re: Inconclusive biopsy Joanne if I may ask, where in California do you live? It has been a good many years since I lived in the San Diego area but at that time Scripps Institute was highly recommended. Off the top of my head I can't think of any other place at the moment. I know how you feel I am stuck in Kansas and getting anywhere is a major problem for me as I am age 69 and pretty much all alone. Dolores Crook pjcrook@...> wrote:That sounds good Kim. I hope everything goes well for you down in Atlanta. It is a long way. I am in California and it is even longer for me, but I would be willing to make the trip if I thought I could get some answers. Atlanta has been very nice to work with. The little bit I have done so far. They seem very nice. Joanne _____ From: [mailto: ] On Behalf Of klaga5 Sent: Monday, June 27, 2005 12:03 PM To: Subject: Re: Inconclusive biopsy Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne 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 June 28, 2005 Report Share Posted June 28, 2005 I will be keeping you in my thoughts and prayers. I go the 30th to see if I have any good news as I had to have a colon biopsy and a biopsy of my esophagas done last week. So far I have four doctors that agree on mito, but nothing conclusive yet. I am a 69 year widow and I lost my 48 year old son 08/25/04 so my life has been sort of up in the air but I am like a baloon loosing its air, I usually manage to come back to earth in pretty much one piece (ha). Dolores Crook pjcrook@...> wrote:Hi Dolores, I live in northern California; Santa to be exact. It is about an hour north of San Francisco. The closest places for me are the University of California San Francisco, and Stanford. I have been to both places. Dr Enns is at Stanford. I think he is more of a researcher than a clinical dr. Of course most Mito docs are. You are right it is pretty lonely. Thank goodness for my on-line friends! Joanne _____ From: [mailto: ] On Behalf Of Dolores Sent: Monday, June 27, 2005 7:24 PM To: Subject: RE: Re: Inconclusive biopsy Joanne if I may ask, where in California do you live? It has been a good many years since I lived in the San Diego area but at that time Scripps Institute was highly recommended. Off the top of my head I can't think of any other place at the moment. I know how you feel I am stuck in Kansas and getting anywhere is a major problem for me as I am age 69 and pretty much all alone. Dolores Crook pjcrook@...> wrote:That sounds good Kim. I hope everything goes well for you down in Atlanta. It is a long way. I am in California and it is even longer for me, but I would be willing to make the trip if I thought I could get some answers. Atlanta has been very nice to work with. The little bit I have done so far. They seem very nice. Joanne _____ From: [mailto: ] On Behalf Of klaga5 Sent: Monday, June 27, 2005 12:03 PM To: Subject: Re: Inconclusive biopsy Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne 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 June 28, 2005 Report Share Posted June 28, 2005 Cohen and Gold in 2001 suggested 20%. kent > > Hi , > > Do you know what the percentages are that other doctors consider to be > indicative of Mito or a dx of mito? > > Just curious if all doctors are following the same technical requirements. > Thanks > Ann-Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2005 Report Share Posted June 28, 2005 Thanks Dolores Joanne _____ From: [mailto: ] On Behalf Of Dolores Sent: Tuesday, June 28, 2005 12:15 PM To: Subject: RE: Re: Inconclusive biopsy I will be keeping you in my thoughts and prayers. I go the 30th to see if I have any good news as I had to have a colon biopsy and a biopsy of my esophagas done last week. So far I have four doctors that agree on mito, but nothing conclusive yet. I am a 69 year widow and I lost my 48 year old son 08/25/04 so my life has been sort of up in the air but I am like a baloon loosing its air, I usually manage to come back to earth in pretty much one piece (ha). Dolores Crook pjcrook@...> wrote:Hi Dolores, I live in northern California; Santa to be exact. It is about an hour north of San Francisco. The closest places for me are the University of California San Francisco, and Stanford. I have been to both places. Dr Enns is at Stanford. I think he is more of a researcher than a clinical dr. Of course most Mito docs are. You are right it is pretty lonely. Thank goodness for my on-line friends! Joanne _____ From: [mailto: ] On Behalf Of Dolores Sent: Monday, June 27, 2005 7:24 PM To: Subject: RE: Re: Inconclusive biopsy Joanne if I may ask, where in California do you live? It has been a good many years since I lived in the San Diego area but at that time Scripps Institute was highly recommended. Off the top of my head I can't think of any other place at the moment. I know how you feel I am stuck in Kansas and getting anywhere is a major problem for me as I am age 69 and pretty much all alone. Dolores Crook pjcrook@...> wrote:That sounds good Kim. I hope everything goes well for you down in Atlanta. It is a long way. I am in California and it is even longer for me, but I would be willing to make the trip if I thought I could get some answers. Atlanta has been very nice to work with. The little bit I have done so far. They seem very nice. Joanne _____ From: [mailto: ] On Behalf Of klaga5 Sent: Monday, June 27, 2005 12:03 PM To: Subject: Re: Inconclusive biopsy Thanks Joanne, It looks like I'll be able to get in with Dr. Schoffner, so I should probably go with it. They called me a couple weeks ago trying to get the rest of my records so they could schedule me. It's a long ways, but the testing would be over with afterwards. That sounds good to me. If I don't have mito, then my primary says it's fibromyalgia. Kim > Kim, I am so sorry you are having all these set backs. I know how > you feel, because that is where I am right now. It is frustrating!!! > I was just wondering this morning if I had the strength to keep > looking for my own dx. I recently had a blood test that showed > slightly elevated ammonia levels. (this was not taken during a crash) > My pcp told me I should consult with dr Enns again. Dr. Enns first > reaction was that the lab didn't do the test right. He was a little > bit more interested when I told him that I had been taking sugar free > candy containing lactitol (which has been studied as an alternative to > lactulose) and that I have felt stronger. And that I also have been > drinking water spiked with baking soda. (If anything will help me > avoid a crash the baking soda will. Don't ask me why.) After I told > him that, he asked me to get another ammonia test and blood gasses > next time I had an attack. > I am trying to go to see dr. Schoffner in Atlanta. My HMO is not co- > operating though. My pcp said we needed to get dr Enns on board to > help convince them. Hang in there. You are certainly not alone in > your quest. > Joanne 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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