Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 I would like to also welcome you Kim you have come to a place where you will receive good information and make many friends. Donna K ---- Ann-Marie peetie@...> wrote: > > Welcome Kim, > > Nice to have you joining our great list. You are now part of a great family. We are here to help you so please ask any questions that you have, no question is too " Small " to ask us. > > Metabolics play a huge part in Mitochondrial disorders. > > I am a 44 yr. old woman who was diagnosed in 1995 with Mitochondrial Cyotology, but am undergoing more testing at this time, b/c my docs now believe I fall under the MELAS catagory, esp. since the last few years I have been having stroke like events. > > Where are you from? And how long ago was your muscle biopsy? Where did you have your biopsy done? And When do they expect your results to be back. Waiting is so hard when we are looking for answers. > > Once again welcome to a wonderful group of people. > Hugs, > Ann-Marie > > > newbie > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting > for the results from my second muscle biopsy. After my first visit, > before tests were run, my MDA doc thought I might have mito. Now it > looks like it could be metabolic or mito. I hope I'll have an > answer when the new results come in. > 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 March 1, 2005 Report Share Posted March 1, 2005 Barbara, do you know of any support groups in the Topeka, KS area? I would love to try to find something more as I am so afraid that is what caused my 48 year old son's illness and sudden death August 25th. I wasn't even aware that there was such a word as " Mytochndrial " until Dr. Baker called me in December after 's untimely death. I know you are all busy with you own lives and concerns, but I don't get much help from my cat (ha). I have been keeping you in my prayers and have asked my prayer group to do the same. Thank you, Dolores Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must be the same Kim I talked to in the metabolic support group. Your history sounds the same. I have dropped out of all other support groups for now due to recovering from Gamma Knife for a benign brain tumor. Anyway, whether you are the same person or not, welcome to . This is a great group. You will get lots of information and support here. Barbara _____ From: klaga5 Sent: Tuesday, March 01, 2005 8:48 AM To: Subject: Re: newbie Thank you a. I'm just waiting and hoping for a diagnosis. I just went through pulminary tests too. They want me on c-pap for apnea, and low oxygen saturation at night. I'm not sure what to do. I thought bi-pap was better. My MDA doc has leaned toward thinking I have mito from the begining. I thought when he told me my first biopsy was PAS positive that mito was ruled out, but after talking with some people, found out that may not be true. The biopsy report said there weren't other components to back up a diagnosis of glycogen storage disease at this time. They then did the second biopsy 2 months ago. I'm still waiting for results. Kim > Kim, > Welcome to the group. I have found this group to be very > supportive and very knowledgeable. It is a great group of people. Do > not be afraid to ask any questions you may have. Usually someone has > gone through something similar. > > Smiles, > a > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting > > for the results from my second muscle biopsy. After my first visit, > > before tests were run, my MDA doc thought I might have mito. Now it > > looks like it could be metabolic or mito. I hope I'll have an > > answer when the new results come in. > > Kim > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Dolores, There is a chapter of United Mitochondrial Disease Foundation (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it back since. They meet every month or every other month, whenever enough people can get together to make it worthwhile. They also sponsor fundraising events. Contact Pam pammiejmd@... As far as I know this is the only mito support group in Kansas. We mito patients are pretty sparse here. All the other support groups I participate in are online, not local. B _____ From: Dolores Sent: Tuesday, March 01, 2005 2:05 PM To: Subject: RE: newbie * Barbara, do you know of any support groups in the Topeka, KS area? I would love to try to find something more as I am so afraid that is what caused my 48 year old son's illness and sudden death August 25th. I wasn't even aware that there was such a word as " Mytochndrial " until Dr. Baker called me in December after 's untimely death. I know you are all busy with you own lives and concerns, but I don't get much help from my cat (ha). I have been keeping you in my prayers and have asked my prayer group to do the same. Thank you, Dolores Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must be the same Kim I talked to in the metabolic support group. Your history sounds the same. I have dropped out of all other support groups for now due to recovering from Gamma Knife for a benign brain tumor. Anyway, whether you are the same person or not, welcome to . This is a great group. You will get lots of information and support here. Barbara .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Thanks for the info, but I have no way to get to KC, I am sort of stuck between a rock and a Dx of Mytochondrial and what kind and what and where do I go then. My Grandson does his best for me, but they have a new (one month old) baby girl and she keeps them busy in their spare time. My surviving son drivesw back and forth to KC every day so his time is taken up also. He runs what errands he can for me and dome to see about anything he knows about on the weekends, but that leaves him very little time for him and his wife. I am not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last night around 8:00 Topeka time if I was late or on time (I use the nickname " Dodie " as that is what one of my Aunt's used to call me) last night when I logged in? Thanks, Dolores Barbara Seaman wheatchild@...> wrote: Dolores, There is a chapter of United Mitochondrial Disease Foundation (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it back since. They meet every month or every other month, whenever enough people can get together to make it worthwhile. They also sponsor fundraising events. Contact Pam pammiejmd@... As far as I know this is the only mito support group in Kansas. We mito patients are pretty sparse here. All the other support groups I participate in are online, not local. B _____ From: Dolores Sent: Tuesday, March 01, 2005 2:05 PM To: Subject: RE: newbie * Barbara, do you know of any support groups in the Topeka, KS area? I would love to try to find something more as I am so afraid that is what caused my 48 year old son's illness and sudden death August 25th. I wasn't even aware that there was such a word as " Mytochndrial " until Dr. Baker called me in December after 's untimely death. I know you are all busy with you own lives and concerns, but I don't get much help from my cat (ha). I have been keeping you in my prayers and have asked my prayer group to do the same. Thank you, Dolores Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must be the same Kim I talked to in the metabolic support group. Your history sounds the same. I have dropped out of all other support groups for now due to recovering from Gamma Knife for a benign brain tumor. Anyway, whether you are the same person or not, welcome to . This is a great group. You will get lots of information and support here. Barbara .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Only a few places in the U.S. do " fresh muscle biopsies " . This doesn't mean the difference between how they treat you, it's how they treat the muscle after it is removed. Those of us who have had fresh muscle biopsies were told that a " runner " is in the operating room to take the sample IMMEDIATELY for testing to the lab, so most of us have had to travel to have the testing done. The local hospital (even if it is a university or research hospital) probably either just looks for ragged red fibers (a sign of mito) but they're not present for everyone. There are some tests that can be done on frozen tissues samples, but I was told that the activities of the five complexes in the mitochondria can only be tested on " fresh " samples, that are taken immediately for testing and not frozen. The shoulder seems like an odd location for a mito disease biopsy - I think most of us have the biopsy from the front thigh or biceps. There are a lot of discussions on this list about " fresh " vs. " frozen " muscle biopsies. I think some others on this list can discuss how glycogen storage disease and mito diseases differ. Specific testing for mitochondrial diseases is generally quite expensive, unless you're " lucky " enough to have a common genetic defect associated with MELAS or another that was identified. Take care, RH > > > > Kim, > > > > Welcome to the group. I have found this group to be > very > > > > supportive and very knowledgeable. It is a great group of > > > people. Do > > > > not be afraid to ask any questions you may have. Usually > > someone > > > has > > > > gone through something similar. > > > > > > > > Smiles, > > > > a > > > > > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm > > > waiting > > > > > for the results from my second muscle biopsy. After my > first > > > visit, > > > > > before tests were run, my MDA doc thought I might have > mito. > > > Now it > > > > > looks like it could be metabolic or mito. I hope I'll have > an > > > > > answer when the new results come in. > > > > > Kim > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi, this is punkys mom from last nights chat. I'm eastern time and I'm almost possitive it was 10 when you came on, because it was almost over. If I'm right it would make it from 6:45 to 8:15 your time. I didn't get on until late and unless you were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. Hope that helps. Lois > [Original Message] > > To: > > Date: 3/1/2005 4:47:30 PM > Subject: RE: newbie > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck between a rock and a Dx > of Mytochondrial and what kind and what and where do I go then. My Grandson does his best for me, but they have a new (one month old) baby girl and she keeps them busy in their spare time. My surviving son drivesw back and forth to KC every day so his time is taken up also. He runs what errands he can for me and dome to see about anything he knows about on the weekends, but that leaves him very little time for him and his wife. I am not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last night around 8:00 Topeka time if I was late or on time (I use the nickname " Dodie " as that is what one of my Aunt's used to call me) last night when I logged in? Thanks, Dolores > > Barbara Seaman wheatchild@...> wrote: > Dolores, There is a chapter of United Mitochondrial Disease Foundation > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > back since. They meet every month or every other month, whenever enough > people can get together to make it worthwhile. They also sponsor fundraising > events. Contact Pam pammiejmd@... > > > > As far as I know this is the only mito support group in Kansas. We mito > patients are pretty sparse here. > > > > All the other support groups I participate in are online, not local. > > B > > > > _____ > > From: Dolores > Sent: Tuesday, March 01, 2005 2:05 PM > To: > Subject: RE: newbie > > > > * > Barbara, do you know of any support groups in the Topeka, KS area? I would > love to try to find something more as I am so afraid that is what caused my > 48 year old son's illness and sudden death August 25th. I wasn't even aware > that there was such a word as " Mytochndrial " until Dr. Baker called me in > December after 's untimely death. I know you are all busy with you own > lives and concerns, but I don't get much help from my cat (ha). I have been > keeping you in my prayers and have asked my prayer group to do the same. > Thank you, Dolores > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must > be the same Kim I talked to in the metabolic > support group. Your history sounds the same. I have dropped out of all other > support groups for now due to recovering from Gamma Knife for a benign brain > tumor. Anyway, whether you are the same person or not, welcome to . > This is a great group. You will get lots of information and support here. > > > > Barbara > > > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi, this is punkys mom from last nights chat. I'm eastern time and I'm almost possitive it was 10 when you came on, because it was almost over. If I'm right it would make it from 6:45 to 8:15 your time. I didn't get on until late and unless you were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. Hope that helps. Lois > [Original Message] > > To: > > Date: 3/1/2005 4:47:30 PM > Subject: RE: newbie > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck between a rock and a Dx > of Mytochondrial and what kind and what and where do I go then. My Grandson does his best for me, but they have a new (one month old) baby girl and she keeps them busy in their spare time. My surviving son drivesw back and forth to KC every day so his time is taken up also. He runs what errands he can for me and dome to see about anything he knows about on the weekends, but that leaves him very little time for him and his wife. I am not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last night around 8:00 Topeka time if I was late or on time (I use the nickname " Dodie " as that is what one of my Aunt's used to call me) last night when I logged in? Thanks, Dolores > > Barbara Seaman wheatchild@...> wrote: > Dolores, There is a chapter of United Mitochondrial Disease Foundation > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > back since. They meet every month or every other month, whenever enough > people can get together to make it worthwhile. They also sponsor fundraising > events. Contact Pam pammiejmd@... > > > > As far as I know this is the only mito support group in Kansas. We mito > patients are pretty sparse here. > > > > All the other support groups I participate in are online, not local. > > B > > > > _____ > > From: Dolores > Sent: Tuesday, March 01, 2005 2:05 PM > To: > Subject: RE: newbie > > > > * > Barbara, do you know of any support groups in the Topeka, KS area? I would > love to try to find something more as I am so afraid that is what caused my > 48 year old son's illness and sudden death August 25th. I wasn't even aware > that there was such a word as " Mytochndrial " until Dr. Baker called me in > December after 's untimely death. I know you are all busy with you own > lives and concerns, but I don't get much help from my cat (ha). I have been > keeping you in my prayers and have asked my prayer group to do the same. > Thank you, Dolores > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must > be the same Kim I talked to in the metabolic > support group. Your history sounds the same. I have dropped out of all other > support groups for now due to recovering from Gamma Knife for a benign brain > tumor. Anyway, whether you are the same person or not, welcome to . > This is a great group. You will get lots of information and support here. > > > > Barbara > > > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 > am undergoing more testing at this time, b/c my docs now believe I > fall under the MELAS catagory, esp. since the last few years I > have been having stroke like events. That's why I wonder if I may have mito (or MELAS). They always assumed I had a stroke in college, some 20 years ago. Again 2 1/2 years ago they had to rule out stroke. With the new technology, they could tell I've never actually had a stroke. I've had absolutely terrible sharp pains in my head on and off as long as I can remember. I've even had my right hand, arm, and side of my face go numb for weeks. I have a couple calcifications on my MRI also. > Where are you from? And how long ago was your muscle biopsy? Where > did you have your biopsy done? And When do they expect your > results to be back? Waiting is so hard when we are looking for > answers. I'm in Illinois, and go to the MDA in St Louis. They did both biopsys. The second one was sent out to Athena labs after they ruled out the two more common forms of glycogen storage diseases with the first one. The results were supposed to be back, but the doc now says another month. Thanks for the welcome. Kim > > Once again welcome to a wonderful group of people. > Hugs, > Ann-Marie > > > newbie > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting > for the results from my second muscle biopsy. After my first visit, > before tests were run, my MDA doc thought I might have mito. Now it > looks like it could be metabolic or mito. I hope I'll have an > answer when the new results come in. > 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 March 1, 2005 Report Share Posted March 1, 2005 Donna K Thank you for the welcome. Kim > > > > Welcome Kim, > > > > Nice to have you joining our great list. You are now part of a great family. We are here to help you so please ask any questions that you have, no question is too " Small " to ask us. > > > > Metabolics play a huge part in Mitochondrial disorders. > > > > I am a 44 yr. old woman who was diagnosed in 1995 with Mitochondrial Cyotology, but am undergoing more testing at this time, b/c my docs now believe I fall under the MELAS catagory, esp. since the last few years I have been having stroke like events. > > > > Where are you from? And how long ago was your muscle biopsy? Where did you have your biopsy done? And When do they expect your results to be back. Waiting is so hard when we are looking for answers. > > > > Once again welcome to a wonderful group of people. > > Hugs, > > Ann-Marie > > > > > > newbie > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting > > for the results from my second muscle biopsy. After my first visit, > > before tests were run, my MDA doc thought I might have mito. Now it > > looks like it could be metabolic or mito. I hope I'll have an > > answer when the new results come in. > > 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 March 1, 2005 Report Share Posted March 1, 2005 Donna K Thank you for the welcome. Kim > > > > Welcome Kim, > > > > Nice to have you joining our great list. You are now part of a great family. We are here to help you so please ask any questions that you have, no question is too " Small " to ask us. > > > > Metabolics play a huge part in Mitochondrial disorders. > > > > I am a 44 yr. old woman who was diagnosed in 1995 with Mitochondrial Cyotology, but am undergoing more testing at this time, b/c my docs now believe I fall under the MELAS catagory, esp. since the last few years I have been having stroke like events. > > > > Where are you from? And how long ago was your muscle biopsy? Where did you have your biopsy done? And When do they expect your results to be back. Waiting is so hard when we are looking for answers. > > > > Once again welcome to a wonderful group of people. > > Hugs, > > Ann-Marie > > > > > > newbie > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm waiting > > for the results from my second muscle biopsy. After my first visit, > > before tests were run, my MDA doc thought I might have mito. Now it > > looks like it could be metabolic or mito. I hope I'll have an > > answer when the new results come in. > > 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 March 1, 2005 Report Share Posted March 1, 2005 Thank you Joanna, I felt funny joining a couple of these lists, because I don't have a definate diagnosis yet. I now see I'm not the only one. Kim > > Hi Kim and welcome. I don't know what else I can add. But to let > you know that this is a safe place. A place to find answers, > direction, support and friendship. > > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 They called the lab to make sure someone was getting the muscle sample while I was on the table, so maybe it was fresh. I'll have to ask my doc when I see him in 6 weeks. Thanks for the info. If it wasn't fresh, and they don't come up with a dx, I suppose I'll have to consider traveling to another place to do it again. I sure hope it won't come to that. Is there a place close to Illinois that does fresh muscle biopsy? Kim > > > > > Kim, > > > > > Welcome to the group. I have found this group to be > > very > > > > > supportive and very knowledgeable. It is a great group of > > > > people. Do > > > > > not be afraid to ask any questions you may have. Usually > > > someone > > > > has > > > > > gone through something similar. > > > > > > > > > > Smiles, > > > > > a > > > > > > > > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm > > > > waiting > > > > > > for the results from my second muscle biopsy. After my > > first > > > > visit, > > > > > > before tests were run, my MDA doc thought I might have > > mito. > > > > Now it > > > > > > looks like it could be metabolic or mito. I hope I'll have > > an > > > > > > answer when the new results come in. > > > > > > Kim > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 They called the lab to make sure someone was getting the muscle sample while I was on the table, so maybe it was fresh. I'll have to ask my doc when I see him in 6 weeks. Thanks for the info. If it wasn't fresh, and they don't come up with a dx, I suppose I'll have to consider traveling to another place to do it again. I sure hope it won't come to that. Is there a place close to Illinois that does fresh muscle biopsy? Kim > > > > > Kim, > > > > > Welcome to the group. I have found this group to be > > very > > > > > supportive and very knowledgeable. It is a great group of > > > > people. Do > > > > > not be afraid to ask any questions you may have. Usually > > > someone > > > > has > > > > > gone through something similar. > > > > > > > > > > Smiles, > > > > > a > > > > > > > > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. I'm > > > > waiting > > > > > > for the results from my second muscle biopsy. After my > > first > > > > visit, > > > > > > before tests were run, my MDA doc thought I might have > > mito. > > > > Now it > > > > > > looks like it could be metabolic or mito. I hope I'll have > > an > > > > > > answer when the new results come in. > > > > > > Kim > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 I think maybe Cleveland Clinic does fresh muscle biopsies, but someone else will correct me if I'm wrong. The lab (Horizon Molecular Medicine) actually had a person there before I started surgery and who left immediately with the sample, so I don't know if that is any different. I think there are a bunch of people on this list who have had samples tested by Athena labs. Have you had a MR SPECT? This was one of the few tests I've had that were abnormal - it can show lactic acid buildup in the brain. I've had about 8 normal brain MRIs. A MR SPECT might be an option you could get done in Chicago. I'm not sure if that's definitive for mito, but is strongly suggestive of it I think. Plus, it's non- invasive, a joy compared to a muscle biopsy or EMG (shudder! my EMG was a nightmare, though YMMV). Take care, RH > > > > > > Kim, > > > > > > Welcome to the group. I have found this group to > be > > > very > > > > > > supportive and very knowledgeable. It is a great group of > > > > > people. Do > > > > > > not be afraid to ask any questions you may have. Usually > > > > someone > > > > > has > > > > > > gone through something similar. > > > > > > > > > > > > Smiles, > > > > > > a > > > > > > > > > > > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. > I'm > > > > > waiting > > > > > > > for the results from my second muscle biopsy. After my > > > first > > > > > visit, > > > > > > > before tests were run, my MDA doc thought I might have > > > mito. > > > > > Now it > > > > > > > looks like it could be metabolic or mito. I hope I'll > have > > > an > > > > > > > answer when the new results come in. > > > > > > > Kim > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I thought would be right as Florida is one hour ahead of me (I think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I was totally lost and I felt that I had interrupted the Chat in some way by logging in when I did. It was sort of when my Dad started moving around and I had to try to find a place to fit in (which was hard to do as everyone had their own little cliques), when I couldn't I would just say forget it. I'm a tad bit to old for that now, I just need to get my times straight so I won't interrupt in the middle of something. It is really hard to adjust to being pretty much alone. My 48 year old son was my helper and when I lost him in August it was a terrific loss in so many ways. Now I am so very frightened that he died of a Mytochondrial problem of some kind. He fits in to " Could It Be Mitochondrial Disease " . I had never heard the word prior to December 2004, when I was told that after rather in-depth research of 31 years of my case history that it appears that I have a Mytochondrial Dysfunction and not Parkinsons Disease. I started seeing a new neurologist in January and I did not ever have Parkinsons as I was told and beiing treat for since 2001. Now I need to get some minor problems out of the way so I can get a definitive answer as to what type of Mytochondrial Dysfnction I have. Thank you for your kindness in trying to help me get my time straightened out before I try it again next week. One more question, Florida is one hour later than Kansas, right? Also, do I go by the calendar or something else? I'm lost?? Thanks, Dolores lois saunders loisanns@...> wrote: Hi, this is punkys mom from last nights chat. I'm eastern time and I'm almost possitive it was 10 when you came on, because it was almost over. If I'm right it would make it from 6:45 to 8:15 your time. I didn't get on until late and unless you were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. Hope that helps. Lois > [Original Message] > > To: > > Date: 3/1/2005 4:47:30 PM > Subject: RE: newbie > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck between a rock and a Dx > of Mytochondrial and what kind and what and where do I go then. My Grandson does his best for me, but they have a new (one month old) baby girl and she keeps them busy in their spare time. My surviving son drivesw back and forth to KC every day so his time is taken up also. He runs what errands he can for me and dome to see about anything he knows about on the weekends, but that leaves him very little time for him and his wife. I am not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last night around 8:00 Topeka time if I was late or on time (I use the nickname " Dodie " as that is what one of my Aunt's used to call me) last night when I logged in? Thanks, Dolores > > Barbara Seaman wheatchild@...> wrote: > Dolores, There is a chapter of United Mitochondrial Disease Foundation > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > back since. They meet every month or every other month, whenever enough > people can get together to make it worthwhile. They also sponsor fundraising > events. Contact Pam pammiejmd@... > > > > As far as I know this is the only mito support group in Kansas. We mito > patients are pretty sparse here. > > > > All the other support groups I participate in are online, not local. > > B > > > > _____ > > From: Dolores > Sent: Tuesday, March 01, 2005 2:05 PM > To: > Subject: RE: newbie > > > > * > Barbara, do you know of any support groups in the Topeka, KS area? I would > love to try to find something more as I am so afraid that is what caused my > 48 year old son's illness and sudden death August 25th. I wasn't even aware > that there was such a word as " Mytochndrial " until Dr. Baker called me in > December after 's untimely death. I know you are all busy with you own > lives and concerns, but I don't get much help from my cat (ha). I have been > keeping you in my prayers and have asked my prayer group to do the same. > Thank you, Dolores > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must > be the same Kim I talked to in the metabolic > support group. Your history sounds the same. I have dropped out of all other > support groups for now due to recovering from Gamma Knife for a benign brain > tumor. Anyway, whether you are the same person or not, welcome to . > This is a great group. You will get lots of information and support here. > > > > Barbara > > > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I thought would be right as Florida is one hour ahead of me (I think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I was totally lost and I felt that I had interrupted the Chat in some way by logging in when I did. It was sort of when my Dad started moving around and I had to try to find a place to fit in (which was hard to do as everyone had their own little cliques), when I couldn't I would just say forget it. I'm a tad bit to old for that now, I just need to get my times straight so I won't interrupt in the middle of something. It is really hard to adjust to being pretty much alone. My 48 year old son was my helper and when I lost him in August it was a terrific loss in so many ways. Now I am so very frightened that he died of a Mytochondrial problem of some kind. He fits in to " Could It Be Mitochondrial Disease " . I had never heard the word prior to December 2004, when I was told that after rather in-depth research of 31 years of my case history that it appears that I have a Mytochondrial Dysfunction and not Parkinsons Disease. I started seeing a new neurologist in January and I did not ever have Parkinsons as I was told and beiing treat for since 2001. Now I need to get some minor problems out of the way so I can get a definitive answer as to what type of Mytochondrial Dysfnction I have. Thank you for your kindness in trying to help me get my time straightened out before I try it again next week. One more question, Florida is one hour later than Kansas, right? Also, do I go by the calendar or something else? I'm lost?? Thanks, Dolores lois saunders loisanns@...> wrote: Hi, this is punkys mom from last nights chat. I'm eastern time and I'm almost possitive it was 10 when you came on, because it was almost over. If I'm right it would make it from 6:45 to 8:15 your time. I didn't get on until late and unless you were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. Hope that helps. Lois > [Original Message] > > To: > > Date: 3/1/2005 4:47:30 PM > Subject: RE: newbie > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck between a rock and a Dx > of Mytochondrial and what kind and what and where do I go then. My Grandson does his best for me, but they have a new (one month old) baby girl and she keeps them busy in their spare time. My surviving son drivesw back and forth to KC every day so his time is taken up also. He runs what errands he can for me and dome to see about anything he knows about on the weekends, but that leaves him very little time for him and his wife. I am not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, so I don't klnow if when I logged in last night around 8:00 Topeka time if I was late or on time (I use the nickname " Dodie " as that is what one of my Aunt's used to call me) last night when I logged in? Thanks, Dolores > > Barbara Seaman wheatchild@...> wrote: > Dolores, There is a chapter of United Mitochondrial Disease Foundation > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > back since. They meet every month or every other month, whenever enough > people can get together to make it worthwhile. They also sponsor fundraising > events. Contact Pam pammiejmd@... > > > > As far as I know this is the only mito support group in Kansas. We mito > patients are pretty sparse here. > > > > All the other support groups I participate in are online, not local. > > B > > > > _____ > > From: Dolores > Sent: Tuesday, March 01, 2005 2:05 PM > To: > Subject: RE: newbie > > > > * > Barbara, do you know of any support groups in the Topeka, KS area? I would > love to try to find something more as I am so afraid that is what caused my > 48 year old son's illness and sudden death August 25th. I wasn't even aware > that there was such a word as " Mytochndrial " until Dr. Baker called me in > December after 's untimely death. I know you are all busy with you own > lives and concerns, but I don't get much help from my cat (ha). I have been > keeping you in my prayers and have asked my prayer group to do the same. > Thank you, Dolores > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you must > be the same Kim I talked to in the metabolic > support group. Your history sounds the same. I have dropped out of all other > support groups for now due to recovering from Gamma Knife for a benign brain > tumor. Anyway, whether you are the same person or not, welcome to . > This is a great group. You will get lots of information and support here. > > > > Barbara > > > > . > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 I haven't heard of an MR SPECT. Thanks for telling me. My MDA doc has done bloodwork, EMG, and muscle biopsys. Blood showed high pyruvate. Does anyone know if MDA St Louis is good? I haven't heard anyone else on the list say they've gone there. I think they're having a mito conference later this year there. Is there an MDA in Chicago, and would it be better? Kim > > > > > > > Kim, > > > > > > > Welcome to the group. I have found this group to > > be > > > > very > > > > > > > supportive and very knowledgeable. It is a great group > of > > > > > > people. Do > > > > > > > not be afraid to ask any questions you may have. Usually > > > > > someone > > > > > > has > > > > > > > gone through something similar. > > > > > > > > > > > > > > Smiles, > > > > > > > a > > > > > > > > > > > > > > > > > > > > > > > Hi, I'm new to this list. My name is Kim and I'm 41. > > I'm > > > > > > waiting > > > > > > > > for the results from my second muscle biopsy. After my > > > > first > > > > > > visit, > > > > > > > > before tests were run, my MDA doc thought I might have > > > > mito. > > > > > > Now it > > > > > > > > looks like it could be metabolic or mito. I hope I'll > > have > > > > an > > > > > > > > answer when the new results come in. > > > > > > > > Kim > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Delores, Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about 9:45 and I saw you come on after me, that was probably when you came back on. There were a lot of people in the chat last night, very hard to keep up. There were a lot of different conversations going. I also moved a lot growing up, always the shy one, never fit in, too skinny, too quiet, too smart, too poor. I always felt like the one on the outside. Since I found these groups, I don't feel like that, I feel like one of the group. Even in the chat room I don't feel like an outsider. I'm sorry if you felt like that last night. If you are on Monday night, I'll make sure you're part of the group, I know how it feels being on the outside looking in. I don't know as much as everybody else, I'm still learning, but I'll help in any way possible. I'm sure if everybody knew you went away feeling left out things would have been different. Thats just the impression I get from everybody. I'm so sorry to hear about your son. Losing a son of any age is just more pain than I can imagine. I hope things get easier for you. Maybe this new neuro can straighten things out so no more damage is done. I've always been told that when God closes a door he opens a window. I truly believe that. Things don't always make sense, but when you look back you see the plan a little better. Just take it one day at a time. Meanwhile if you just need to blow off some steam, email me. We all need to from time to time. From what I've seen so far on the reminders they've been the same time, but like I said I'm still new, so like with the time difference, it doesn't hurt to second guess. Best of wishes for you, Lois > [Original Message] > > To: > > Date: 3/1/2005 7:25:08 PM > Subject: RE: newbie > > > Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I thought would be right as Florida is one hour ahead of me (I think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I was totally lost and I felt that I had interrupted the Chat in some way by logging in when I did. It was sort of when my Dad started moving around and I had to try to find a place to fit in (which was hard to do as everyone had their own little cliques), when I couldn't I would just say forget it. I'm a tad bit to old for that now, I just need to get my times straight so I won't interrupt in the middle of something. It is really hard to adjust to being pretty much alone. My 48 year old son was my helper and when I lost him in August it was a terrific loss in so many ways. Now I am so very frightened that he died of a Mytochondrial problem of some kind. He fits in to " Could > It Be Mitochondrial Disease " . I had never heard the word prior to December 2004, when I was told that after rather in-depth research of 31 years of my case history that it appears that I have a Mytochondrial Dysfunction and not Parkinsons Disease. I started seeing a new neurologist in January and I did not ever have Parkinsons as I was told and beiing treat for since 2001. Now I need to get some minor problems out of the way so I can get a definitive answer as to what type of Mytochondrial Dysfnction I have. Thank you for your kindness in trying to help me get my time straightened out before I try it again next week. One more question, Florida is one hour later than Kansas, right? Also, do I go by the calendar or something else? I'm lost?? Thanks, Dolores > > lois saunders loisanns@...> wrote: > > Hi, this is punkys mom from last nights chat. I'm eastern time and I'm > almost > possitive it was 10 when you came on, because it was almost over. If I'm > right it > would make it from 6:45 to 8:15 your time. I didn't get on until late and > unless you > were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. > Hope that helps. > Lois > > > > [Original Message] > > > > To: > > > Date: 3/1/2005 4:47:30 PM > > Subject: RE: newbie > > > > > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck > between a rock and a Dx > > of Mytochondrial and what kind and what and where do I go then. My > Grandson does his best for me, but they have a new (one month old) baby > girl and she keeps them busy in their spare time. My surviving son drivesw > back and forth to KC every day so his time is taken up also. He runs what > errands he can for me and dome to see about anything he knows about on the > weekends, but that leaves him very little time for him and his wife. I am > not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but > when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, > so I don't klnow if when I logged in last night around 8:00 Topeka time if > I was late or on time (I use the nickname " Dodie " as that is what one of my > Aunt's used to call me) last night when I logged in? Thanks, Dolores > > > > > Barbara Seaman wheatchild@...> wrote: > > Dolores, There is a chapter of United Mitochondrial Disease Foundation > > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > > back since. They meet every month or every other month, whenever enough > > people can get together to make it worthwhile. They also sponsor > fundraising > > events. Contact Pam pammiejmd@... > > > > > > > > As far as I know this is the only mito support group in Kansas. We mito > > patients are pretty sparse here. > > > > > > > > All the other support groups I participate in are online, not local. > > > > B > > > > > > > > _____ > > > > From: Dolores > > Sent: Tuesday, March 01, 2005 2:05 PM > > To: > > Subject: RE: newbie > > > > > > > > * > > Barbara, do you know of any support groups in the Topeka, KS area? I > would > > love to try to find something more as I am so afraid that is what caused > my > > 48 year old son's illness and sudden death August 25th. I wasn't even > aware > > that there was such a word as " Mytochndrial " until Dr. Baker called me in > > December after 's untimely death. I know you are all busy with you > own > > lives and concerns, but I don't get much help from my cat (ha). I have > been > > keeping you in my prayers and have asked my prayer group to do the same. > > Thank you, Dolores > > > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you > must > > be the same Kim I talked to in the metabolic > > support group. Your history sounds the same. I have dropped out of all > other > > support groups for now due to recovering from Gamma Knife for a benign > brain > > tumor. Anyway, whether you are the same person or not, welcome to > . > > This is a great group. You will get lots of information and support here. > > > > > > > > Barbara > > > > > > > > . > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Delores, Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about 9:45 and I saw you come on after me, that was probably when you came back on. There were a lot of people in the chat last night, very hard to keep up. There were a lot of different conversations going. I also moved a lot growing up, always the shy one, never fit in, too skinny, too quiet, too smart, too poor. I always felt like the one on the outside. Since I found these groups, I don't feel like that, I feel like one of the group. Even in the chat room I don't feel like an outsider. I'm sorry if you felt like that last night. If you are on Monday night, I'll make sure you're part of the group, I know how it feels being on the outside looking in. I don't know as much as everybody else, I'm still learning, but I'll help in any way possible. I'm sure if everybody knew you went away feeling left out things would have been different. Thats just the impression I get from everybody. I'm so sorry to hear about your son. Losing a son of any age is just more pain than I can imagine. I hope things get easier for you. Maybe this new neuro can straighten things out so no more damage is done. I've always been told that when God closes a door he opens a window. I truly believe that. Things don't always make sense, but when you look back you see the plan a little better. Just take it one day at a time. Meanwhile if you just need to blow off some steam, email me. We all need to from time to time. From what I've seen so far on the reminders they've been the same time, but like I said I'm still new, so like with the time difference, it doesn't hurt to second guess. Best of wishes for you, Lois > [Original Message] > > To: > > Date: 3/1/2005 7:25:08 PM > Subject: RE: newbie > > > Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I thought would be right as Florida is one hour ahead of me (I think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I was totally lost and I felt that I had interrupted the Chat in some way by logging in when I did. It was sort of when my Dad started moving around and I had to try to find a place to fit in (which was hard to do as everyone had their own little cliques), when I couldn't I would just say forget it. I'm a tad bit to old for that now, I just need to get my times straight so I won't interrupt in the middle of something. It is really hard to adjust to being pretty much alone. My 48 year old son was my helper and when I lost him in August it was a terrific loss in so many ways. Now I am so very frightened that he died of a Mytochondrial problem of some kind. He fits in to " Could > It Be Mitochondrial Disease " . I had never heard the word prior to December 2004, when I was told that after rather in-depth research of 31 years of my case history that it appears that I have a Mytochondrial Dysfunction and not Parkinsons Disease. I started seeing a new neurologist in January and I did not ever have Parkinsons as I was told and beiing treat for since 2001. Now I need to get some minor problems out of the way so I can get a definitive answer as to what type of Mytochondrial Dysfnction I have. Thank you for your kindness in trying to help me get my time straightened out before I try it again next week. One more question, Florida is one hour later than Kansas, right? Also, do I go by the calendar or something else? I'm lost?? Thanks, Dolores > > lois saunders loisanns@...> wrote: > > Hi, this is punkys mom from last nights chat. I'm eastern time and I'm > almost > possitive it was 10 when you came on, because it was almost over. If I'm > right it > would make it from 6:45 to 8:15 your time. I didn't get on until late and > unless you > were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. > Hope that helps. > Lois > > > > [Original Message] > > > > To: > > > Date: 3/1/2005 4:47:30 PM > > Subject: RE: newbie > > > > > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck > between a rock and a Dx > > of Mytochondrial and what kind and what and where do I go then. My > Grandson does his best for me, but they have a new (one month old) baby > girl and she keeps them busy in their spare time. My surviving son drivesw > back and forth to KC every day so his time is taken up also. He runs what > errands he can for me and dome to see about anything he knows about on the > weekends, but that leaves him very little time for him and his wife. I am > not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but > when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, > so I don't klnow if when I logged in last night around 8:00 Topeka time if > I was late or on time (I use the nickname " Dodie " as that is what one of my > Aunt's used to call me) last night when I logged in? Thanks, Dolores > > > > > Barbara Seaman wheatchild@...> wrote: > > Dolores, There is a chapter of United Mitochondrial Disease Foundation > > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > > back since. They meet every month or every other month, whenever enough > > people can get together to make it worthwhile. They also sponsor > fundraising > > events. Contact Pam pammiejmd@... > > > > > > > > As far as I know this is the only mito support group in Kansas. We mito > > patients are pretty sparse here. > > > > > > > > All the other support groups I participate in are online, not local. > > > > B > > > > > > > > _____ > > > > From: Dolores > > Sent: Tuesday, March 01, 2005 2:05 PM > > To: > > Subject: RE: newbie > > > > > > > > * > > Barbara, do you know of any support groups in the Topeka, KS area? I > would > > love to try to find something more as I am so afraid that is what caused > my > > 48 year old son's illness and sudden death August 25th. I wasn't even > aware > > that there was such a word as " Mytochndrial " until Dr. Baker called me in > > December after 's untimely death. I know you are all busy with you > own > > lives and concerns, but I don't get much help from my cat (ha). I have > been > > keeping you in my prayers and have asked my prayer group to do the same. > > Thank you, Dolores > > > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you > must > > be the same Kim I talked to in the metabolic > > support group. Your history sounds the same. I have dropped out of all > other > > support groups for now due to recovering from Gamma Knife for a benign > brain > > tumor. Anyway, whether you are the same person or not, welcome to > . > > This is a great group. You will get lots of information and support here. > > > > > > > > Barbara > > > > > > > > . > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2005 Report Share Posted March 1, 2005 Kim,welcome, warm support and lots of knowledge here...welcome Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Thank you , Kim > Kim,welcome, warm support and lots of knowledge here...welcome > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 Kim, If you go to www.mdausa.org http://www.mdausa.org/> and look for the Find Local MDA clinic link you can put your zip code in and it will tell you where the closest MDA clinic is to you and how to get in contact with them. Sorry I don't know anything about the St. Louis Clinic. Yes, there will be a conference in St. Louis this year. It is sponsored by the United Mitochondrial Disease Foundation. For more information on the conference you can go to the UMDF website at www.umdf.org http://www.umdf.org/> Hope to see you in chat again on Monday. Kristie (Hoodlum) Message: 17 Date: Wed, 02 Mar 2005 01:02:11 -0000 Subject: Re: newbie I haven't heard of an MR SPECT. Thanks for telling me. My MDA doc has done bloodwork, EMG, and muscle biopsys. Blood showed high pyruvate. Does anyone know if MDA St Louis is good? I haven't heard anyone else on the list say they've gone there. I think they're having a mito conference later this year there. Is there an MDA in Chicago, and would it be better? Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2005 Report Share Posted March 2, 2005 I tried your e-mail address, but it wouldn't go thru so I'll see what happens this way. Again, thanks for your kindness. Dolores lois saunders loisanns@...> wrote: Delores, Yes, one hour, I'm so sorry, I got mixed up. I didn't get on until about 9:45 and I saw you come on after me, that was probably when you came back on. There were a lot of people in the chat last night, very hard to keep up. There were a lot of different conversations going. I also moved a lot growing up, always the shy one, never fit in, too skinny, too quiet, too smart, too poor. I always felt like the one on the outside. Since I found these groups, I don't feel like that, I feel like one of the group. Even in the chat room I don't feel like an outsider. I'm sorry if you felt like that last night. If you are on Monday night, I'll make sure you're part of the group, I know how it feels being on the outside looking in. I don't know as much as everybody else, I'm still learning, but I'll help in any way possible. I'm sure if everybody knew you went away feeling left out things would have been different. Thats just the impression I get from everybody. I'm so sorry to hear about your son. Losing a son of any age is just more pain than I can imagine. I hope things get easier for you. Maybe this new neuro can straighten things out so no more damage is done. I've always been told that when God closes a door he opens a window. I truly believe that. Things don't always make sense, but when you look back you see the plan a little better. Just take it one day at a time. Meanwhile if you just need to blow off some steam, email me. We all need to from time to time. From what I've seen so far on the reminders they've been the same time, but like I said I'm still new, so like with the time difference, it doesn't hurt to second guess. Best of wishes for you, Lois > [Original Message] > > To: > > Date: 3/1/2005 7:25:08 PM > Subject: RE: newbie > > > Hi, Punkies Mom, I had logged in right around 8:00 Topeka time (CST) which I thought would be right as Florida is one hour ahead of me (I think), so that should make it 9:00 (EDT) and end at 10:00 (EDT). But, when I went back in after all had loged off, the time given was 9:45 - 11:15 PM EDT. By that time I was totally lost and I felt that I had interrupted the Chat in some way by logging in when I did. It was sort of when my Dad started moving around and I had to try to find a place to fit in (which was hard to do as everyone had their own little cliques), when I couldn't I would just say forget it. I'm a tad bit to old for that now, I just need to get my times straight so I won't interrupt in the middle of something. It is really hard to adjust to being pretty much alone. My 48 year old son was my helper and when I lost him in August it was a terrific loss in so many ways. Now I am so very frightened that he died of a Mytochondrial problem of some kind. He fits in to " Could > It Be Mitochondrial Disease " . I had never heard the word prior to December 2004, when I was told that after rather in-depth research of 31 years of my case history that it appears that I have a Mytochondrial Dysfunction and not Parkinsons Disease. I started seeing a new neurologist in January and I did not ever have Parkinsons as I was told and beiing treat for since 2001. Now I need to get some minor problems out of the way so I can get a definitive answer as to what type of Mytochondrial Dysfnction I have. Thank you for your kindness in trying to help me get my time straightened out before I try it again next week. One more question, Florida is one hour later than Kansas, right? Also, do I go by the calendar or something else? I'm lost?? Thanks, Dolores > > lois saunders loisanns@...> wrote: > > Hi, this is punkys mom from last nights chat. I'm eastern time and I'm > almost > possitive it was 10 when you came on, because it was almost over. If I'm > right it > would make it from 6:45 to 8:15 your time. I didn't get on until late and > unless you > were on earlier too, you came on while I was there. It's 8:45 to 10:15 EDT. > Hope that helps. > Lois > > > > [Original Message] > > > > To: > > > Date: 3/1/2005 4:47:30 PM > > Subject: RE: newbie > > > > > > > > Thanks for the info, but I have no way to get to KC, I am sort of stuck > between a rock and a Dx > > of Mytochondrial and what kind and what and where do I go then. My > Grandson does his best for me, but they have a new (one month old) baby > girl and she keeps them busy in their spare time. My surviving son drivesw > back and forth to KC every day so his time is taken up also. He runs what > errands he can for me and dome to see about anything he knows about on the > weekends, but that leaves him very little time for him and his wife. I am > not sure about the Chat time on Monday nights as 9:00 - 10:00 PM EDT, but > when I go back in to try to read what went on it says 9:45 - 11:15 PM EDT, > so I don't klnow if when I logged in last night around 8:00 Topeka time if > I was late or on time (I use the nickname " Dodie " as that is what one of my > Aunt's used to call me) last night when I logged in? Thanks, Dolores > > > > > Barbara Seaman wheatchild@...> wrote: > > Dolores, There is a chapter of United Mitochondrial Disease Foundation > > (UMDF) in Kansas City. I was at one meeting in 2001 but have not made it > > back since. They meet every month or every other month, whenever enough > > people can get together to make it worthwhile. They also sponsor > fundraising > > events. Contact Pam pammiejmd@... > > > > > > > > As far as I know this is the only mito support group in Kansas. We mito > > patients are pretty sparse here. > > > > > > > > All the other support groups I participate in are online, not local. > > > > B > > > > > > > > _____ > > > > From: Dolores > > Sent: Tuesday, March 01, 2005 2:05 PM > > To: > > Subject: RE: newbie > > > > > > > > * > > Barbara, do you know of any support groups in the Topeka, KS area? I > would > > love to try to find something more as I am so afraid that is what caused > my > > 48 year old son's illness and sudden death August 25th. I wasn't even > aware > > that there was such a word as " Mytochndrial " until Dr. Baker called me in > > December after 's untimely death. I know you are all busy with you > own > > lives and concerns, but I don't get much help from my cat (ha). I have > been > > keeping you in my prayers and have asked my prayer group to do the same. > > Thank you, Dolores > > > > Barbara Seaman wheatchild@...> wrote:Hi Kim, I think you > must > > be the same Kim I talked to in the metabolic > > support group. Your history sounds the same. I have dropped out of all > other > > support groups for now due to recovering from Gamma Knife for a benign > brain > > tumor. Anyway, whether you are the same person or not, welcome to > . > > This is a great group. You will get lots of information and support here. > > > > > > > > Barbara > > > > > > > > . > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2006 Report Share Posted January 9, 2006 Hi Sue, Welcome to the list! It's difficult to know the answer to your question. The one way to find out would be to remove the almond product and serve something low in salicylates for snack for several days and see if you see a difference. Jody mom to -7 and -9 SCD 1/03 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 > > Hi Sue, > > Welcome to the list! > > It's difficult to know the answer to your question. The one way to > find out would be to remove the almond product and serve something low > in salicylates for snack for several days and see if you see a difference. > > > Jody > mom to -7 and -9 > SCD 1/03 > Hi Jody Thanks for the welcome. Do you think using pecans instead would help, according to the info I have pecans are moderate sals and almonds are very high. I need to supply some kind of biscuit to her school each day for snack as that is all she will eat. Best wishes - Sue Quote Link to comment Share on other sites More sharing options...
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