Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Hello, I was reading your post just now. I particularly noted that you mentioned your son seems to have problems that are not related. That is familiar to me and my son. I did get my answer in 1997 when I went to the pediatrician/internal medicine doctor in Milwaukee that diagnosed my sister with MELAS. I had special MRI that showed some spots of some sort that indicated I have had seizures and blackouts. I myself can only remember 3 in my life. I cannot feel the top of my right foot now and then (that is what prompted me to get tested), I have always had a hearing problem, I have diabetes, and occasional constipation. My son 10 year old son 3 years ago developed constant very bad headaches. This went on for about a 2 months and regular MRI's showed nothing. They eventually went away. Then last year he started having constipation problems where nothing seemed to work. He was eating fiber, plenty of water and exercise. Finally after a specialist in UW-Madison could not help him we went to see Dr Tick in Milwaukee. We paid for the MELAS blood test and in January it came back positive. We started on the q-gel in December and he has been better since. He weighs 95 lbs so he takes three of the 15 mg gel caps twice a day. I beleive that is a little more than the 5 times your body weight in kilos recommendation. Anyhow, Swanson Vitamins has a bottle of 120 for $13.50. The q-gel is an over the counter med which most insurance plans will not cover but it does have orphan drug status and is in trials. The doctor also wrote a prescription for Carnitor but he will not take the liquid and has a hard time swallowing the pills. I have been crushing up the pills and putting them in pudding. The liquid is cherry tasting. Anyhow, hope you can find out what is up with your son. Oh, one other thing--when he is sick or tired does he act like a toddler? I mean will he not talk, just act like you know what he wants and whine and get real emotional? Dr Tick said that is also a symptom of MELAS. In fact when I was in testing they asked alot of questions like do you know what day it is and such. They also asked if I forget often or say the wrong words? I do know now and can tell, that when I am tired or upset I cannot think of the right words such as the living room, refrigerator, etc and will have to tell my son or husband over there, that thing that keeps the food cold etc. I know others on the list call it mito brain. Also a symptom of MELAS or mito in general is that when sick or tired tend to sleep alot. In December and January my son slept from 8 pm until 3 pm the next day for 4 days in a row. Well, that is all for now. janet sample found my way back on > Hi, > I have been reading the site for a few months and have learned so > very much. Thank you all for sharing your stories and insight. > > I do not know for sure if I have this illness or not. My son has an > appointment with Dr. Cohen in March...I had hoped to see him as well > but as you all know he no longer takes adults. I seem to be in the > same position as hazelpone looking for someone to take an adult. Is > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > MI. > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > Hospital in Chicago? He is a neuromuscular doctor that my > neurologist has recommended. I have not heard of him on the web > site. > > My son, 9, was in the hospital twice in January. He seemed to have > developed asthma out of the blue and he is still wheezing everyday. > Then on top of that after a exuberant kick ball game last saturday > he started limping. (But he doesn't remember doing anything to his > foot, in fact it is his left foot and he would have been kicking > with his right). After five days on crutches they took x-rays. No > problem with the bones, although it is swollen and kind of red > purple. > > It reminds me of what someone would describe gout as. Very painful, > etc...Poor, Jack has had one thing after another. All of which has > seemed not to be connected. The doctors in the hospital even > suggested that he wanted to be sick, because they could not explain > the chest pain he was having! Even though his wheezing was so bad. > But at one moment he would not be wheezing and a new doctor would > come in and listen to him...and look at me like I was crazy and ask > me if I knew what wheezing was...then a few minutes later he would > begin wheezing. > > It is really tough because I have not run into one doctor who > understand about mito. They don't know how to work it up or even > what to look for. > > I'm interested in the post that said the one doctor in new york only > knows of 44 patients with MNGE; because I think that may be what me > and my son have. I was diagnosed with multiple sclerosis three > years ago...(spots on my brain). Now the new neuro is the one who > thinks that it may be mito instead. My son has had gastro problems > since he was three months. I have had gastro problems since I was > five years old. But is gastro problems...ie. MNGE that rare? > > I know this is really long (I just finally figured out how to post a > message)but I have been wanting to say this stuff to people who know > what I'm talking about! I have spoken to Laurie on line...what a > gift she is! > > Thanks for reading. > > Vivian > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Vivian I'm glad you are able to post now. laurie " Reply-To: Date: Sun, 16 Feb 2003 04:10:38 -0000 To: Subject: found my way back on Hi, I have been reading the site for a few months and have learned so very much. Thank you all for sharing your stories and insight. I do not know for sure if I have this illness or not. My son has an appointment with Dr. Cohen in March...I had hoped to see him as well but as you all know he no longer takes adults. I seem to be in the same position as hazelpone looking for someone to take an adult. Is the Dr. Levine that I have heard talked about...is he in Ann Arbor, MI. Also, has anyone heard of Dr. Shiffer from Northwestern Memorial Hospital in Chicago? He is a neuromuscular doctor that my neurologist has recommended. I have not heard of him on the web site. My son, 9, was in the hospital twice in January. He seemed to have developed asthma out of the blue and he is still wheezing everyday. Then on top of that after a exuberant kick ball game last saturday he started limping. (But he doesn't remember doing anything to his foot, in fact it is his left foot and he would have been kicking with his right). After five days on crutches they took x-rays. No problem with the bones, although it is swollen and kind of red purple. It reminds me of what someone would describe gout as. Very painful, etc...Poor, Jack has had one thing after another. All of which has seemed not to be connected. The doctors in the hospital even suggested that he wanted to be sick, because they could not explain the chest pain he was having! Even though his wheezing was so bad. But at one moment he would not be wheezing and a new doctor would come in and listen to him...and look at me like I was crazy and ask me if I knew what wheezing was...then a few minutes later he would begin wheezing. It is really tough because I have not run into one doctor who understand about mito. They don't know how to work it up or even what to look for. I'm interested in the post that said the one doctor in new york only knows of 44 patients with MNGE; because I think that may be what me and my son have. I was diagnosed with multiple sclerosis three years ago...(spots on my brain). Now the new neuro is the one who thinks that it may be mito instead. My son has had gastro problems since he was three months. I have had gastro problems since I was five years old. But is gastro problems...ie. MNGE that rare? I know this is really long (I just finally figured out how to post a message)but I have been wanting to say this stuff to people who know what I'm talking about! I have spoken to Laurie on line...what a gift she is! Thanks for reading. Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Vivian, Do you know what did of doctor Dr. Levine is? I sure can't find him/her in Michigan if he/she is a neuro. > > I do not know for sure if I have this illness or not. My son has an > appointment with Dr. Cohen in March...I had hoped to see him as well > but as you all know he no longer takes adults. I seem to be in the > same position as hazelpone looking for someone to take an adult. Is > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > MI. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Dear Janet Two things that you said hit right on for me. When I get tired or I don't feel well, I lose words. I point or describe what I want, ie. the thing you drink from that holds liquid, (cup). I can use a ton of words for one that I can't remember. Sometimes it is better. Recently I thought I was doing so much better. (For three years they told me that I had MS), but just the past week or two...since Jack got out of the hospital, my eyes have been flashing (a spot that tells me my body is starting to act up again), tachycardia, and muscle cramps...and boy can I sleep. I got Jack off to school Friday and went directly to bed, I slept so deep for three hours that I couldn't remember the day it was. It is so good to talk to anyone who can relate. Thanks for writing back. Vivian > Hello, > > I was reading your post just now. I particularly noted that you mentioned > your son seems to have problems that are not related. > > That is familiar to me and my son. I did get my answer in 1997 when I went > to the pediatrician/internal medicine doctor in Milwaukee that diagnosed my > sister with MELAS. I had special MRI that showed some spots of some sort > that indicated I have had seizures and blackouts. I myself can only > remember 3 in my life. > > I cannot feel the top of my right foot now and then (that is what prompted > me to get tested), I have always had a hearing problem, I have diabetes, and > occasional constipation. > > My son 10 year old son 3 years ago developed constant very bad headaches. > This went on for about a 2 months and regular MRI's showed nothing. They > eventually went away. Then last year he started having constipation > problems where nothing seemed to work. > > He was eating fiber, plenty of water and exercise. Finally after a > specialist in UW-Madison could not help him we went to see Dr Tick in > Milwaukee. We paid for the MELAS blood test and in January it came back > positive. > > We started on the q-gel in December and he has been better since. > > He weighs 95 lbs so he takes three of the 15 mg gel caps twice a day. I > beleive that is a little more than the 5 times your body weight in kilos > recommendation. Anyhow, Swanson Vitamins has a bottle of 120 for $13.50. > The q-gel is an over the counter med which most insurance plans will not > cover but it does have orphan drug status and is in trials. > > The doctor also wrote a prescription for Carnitor but he will not take the > liquid and has a hard time swallowing the pills. I have been crushing up > the pills and putting them in pudding. The liquid is cherry tasting. > > Anyhow, hope you can find out what is up with your son. > > Oh, one other thing--when he is sick or tired does he act like a toddler? > I mean will he not talk, just act like you know what he wants and whine and > get real emotional? Dr Tick said that is also a symptom of MELAS. > > > In fact when I was in testing they asked alot of questions like do you know > what day it is and such. They also asked if I forget often or say the wrong > words? > > I do know now and can tell, that when I am tired or upset I cannot think of > the right words such as the living room, refrigerator, etc and will have to > tell my son or husband over there, that thing that keeps the food cold etc. > > I know others on the list call it mito brain. > > Also a symptom of MELAS or mito in general is that when sick or tired tend > to sleep alot. In December and January my son slept from 8 pm until 3 pm > the next day for 4 days in a row. > Well, that is all for now. > > janet sample > found my way back on > > > > Hi, > > I have been reading the site for a few months and have learned so > > very much. Thank you all for sharing your stories and insight. > > > > I do not know for sure if I have this illness or not. My son has an > > appointment with Dr. Cohen in March...I had hoped to see him as well > > but as you all know he no longer takes adults. I seem to be in the > > same position as hazelpone looking for someone to take an adult. Is > > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > > MI. > > > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > > Hospital in Chicago? He is a neuromuscular doctor that my > > neurologist has recommended. I have not heard of him on the web > > site. > > > > My son, 9, was in the hospital twice in January. He seemed to have > > developed asthma out of the blue and he is still wheezing everyday. > > Then on top of that after a exuberant kick ball game last saturday > > he started limping. (But he doesn't remember doing anything to his > > foot, in fact it is his left foot and he would have been kicking > > with his right). After five days on crutches they took x-rays. No > > problem with the bones, although it is swollen and kind of red > > purple. > > > > It reminds me of what someone would describe gout as. Very painful, > > etc...Poor, Jack has had one thing after another. All of which has > > seemed not to be connected. The doctors in the hospital even > > suggested that he wanted to be sick, because they could not explain > > the chest pain he was having! Even though his wheezing was so bad. > > But at one moment he would not be wheezing and a new doctor would > > come in and listen to him...and look at me like I was crazy and ask > > me if I knew what wheezing was...then a few minutes later he would > > begin wheezing. > > > > It is really tough because I have not run into one doctor who > > understand about mito. They don't know how to work it up or even > > what to look for. > > > > I'm interested in the post that said the one doctor in new york only > > knows of 44 patients with MNGE; because I think that may be what me > > and my son have. I was diagnosed with multiple sclerosis three > > years ago...(spots on my brain). Now the new neuro is the one who > > thinks that it may be mito instead. My son has had gastro problems > > since he was three months. I have had gastro problems since I was > > five years old. But is gastro problems...ie. MNGE that rare? > > > > I know this is really long (I just finally figured out how to post a > > message)but I have been wanting to say this stuff to people who know > > what I'm talking about! I have spoken to Laurie on line...what a > > gift she is! > > > > Thanks for reading. > > > > Vivian > > > > > > 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. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Hey Laurie, It is good to finally be able to communicate. I hope you are feeling better soon, Vivian > Vivian > > I'm glad you are able to post now. > > laurie > > From: " vivianbryant5 <schumacher53@a...> " <schumacher53@a...> > Reply-To: > Date: Sun, 16 Feb 2003 04:10:38 -0000 > To: > Subject: found my way back on > > > Hi, > I have been reading the site for a few months and have learned so > very much. Thank you all for sharing your stories and insight. > > I do not know for sure if I have this illness or not. My son has an > appointment with Dr. Cohen in March...I had hoped to see him as well > but as you all know he no longer takes adults. I seem to be in the > same position as hazelpone looking for someone to take an adult. Is > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > MI. > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > Hospital in Chicago? He is a neuromuscular doctor that my > neurologist has recommended. I have not heard of him on the web > site. > > My son, 9, was in the hospital twice in January. He seemed to have > developed asthma out of the blue and he is still wheezing everyday. > Then on top of that after a exuberant kick ball game last saturday > he started limping. (But he doesn't remember doing anything to his > foot, in fact it is his left foot and he would have been kicking > with his right). After five days on crutches they took x-rays. No > problem with the bones, although it is swollen and kind of red > purple. > > It reminds me of what someone would describe gout as. Very painful, > etc...Poor, Jack has had one thing after another. All of which has > seemed not to be connected. The doctors in the hospital even > suggested that he wanted to be sick, because they could not explain > the chest pain he was having! Even though his wheezing was so bad. > But at one moment he would not be wheezing and a new doctor would > come in and listen to him...and look at me like I was crazy and ask > me if I knew what wheezing was...then a few minutes later he would > begin wheezing. > > It is really tough because I have not run into one doctor who > understand about mito. They don't know how to work it up or even > what to look for. > > I'm interested in the post that said the one doctor in new york only > knows of 44 patients with MNGE; because I think that may be what me > and my son have. I was diagnosed with multiple sclerosis three > years ago...(spots on my brain). Now the new neuro is the one who > thinks that it may be mito instead. My son has had gastro problems > since he was three months. I have had gastro problems since I was > five years old. But is gastro problems...ie. MNGE that rare? > > I know this is really long (I just finally figured out how to post a > message)but I have been wanting to say this stuff to people who know > what I'm talking about! I have spoken to Laurie on line...what a > gift she is! > > Thanks for reading. > > Vivian > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 -Hey , I heard of someone else mention Dr. Levine. Maybe I got it wrong. I thought they said that he was in Michigan but a far drive. I probably got the name wrong...never mind. Thanks, Vivian -- In , <dgregori@w...> wrote: > Vivian, > > Do you know what did of doctor Dr. Levine is? I sure can't find > him/her in Michigan if he/she is a neuro. > > > > > > > > I do not know for sure if I have this illness or not. My son has an > > appointment with Dr. Cohen in March...I had hoped to see him as well > > but as you all know he no longer takes adults. I seem to be in the > > same position as hazelpone looking for someone to take an adult. Is > > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > > MI. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Dear Vivian, I am a relative newbie here too and I find everyone so kind and helpful. I was interested in the MNGIE post too- about it being so rare as this is what I am currently being checked out for. If you learn anything, let me knowor if anyone on this site has info I'd be very interested, take care, Celia > Hi, > I have been reading the site for a few months and have learned so > very much. Thank you all for sharing your stories and insight. > > I do not know for sure if I have this illness or not. My son has an > appointment with Dr. Cohen in March...I had hoped to see him as well > but as you all know he no longer takes adults. I seem to be in the > same position as hazelpone looking for someone to take an adult. Is > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > MI. > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > Hospital in Chicago? He is a neuromuscular doctor that my > neurologist has recommended. I have not heard of him on the web > site. > > My son, 9, was in the hospital twice in January. He seemed to have > developed asthma out of the blue and he is still wheezing everyday. > Then on top of that after a exuberant kick ball game last saturday > he started limping. (But he doesn't remember doing anything to his > foot, in fact it is his left foot and he would have been kicking > with his right). After five days on crutches they took x-rays. No > problem with the bones, although it is swollen and kind of red > purple. > > It reminds me of what someone would describe gout as. Very painful, > etc...Poor, Jack has had one thing after another. All of which has > seemed not to be connected. The doctors in the hospital even > suggested that he wanted to be sick, because they could not explain > the chest pain he was having! Even though his wheezing was so bad. > But at one moment he would not be wheezing and a new doctor would > come in and listen to him...and look at me like I was crazy and ask > me if I knew what wheezing was...then a few minutes later he would > begin wheezing. > > It is really tough because I have not run into one doctor who > understand about mito. They don't know how to work it up or even > what to look for. > > I'm interested in the post that said the one doctor in new york only > knows of 44 patients with MNGE; because I think that may be what me > and my son have. I was diagnosed with multiple sclerosis three > years ago...(spots on my brain). Now the new neuro is the one who > thinks that it may be mito instead. My son has had gastro problems > since he was three months. I have had gastro problems since I was > five years old. But is gastro problems...ie. MNGE that rare? > > I know this is really long (I just finally figured out how to post a > message)but I have been wanting to say this stuff to people who know > what I'm talking about! I have spoken to Laurie on line...what a > gift she is! > > Thanks for reading. > > Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Just thought I'd point out that all of these named Mitochondrial diseases are rare. That's one of the reasons they are so hard to diagnose as rare disorders are not often considered when funding is needed for research. Alice --- " cghng888 wrote: > Dear Vivian, I am a relative newbie here too and I > find everyone so > kind and helpful. I was interested in the MNGIE post > too- about it > being so rare as this is what I am currently being > checked out for. > If you learn anything, let me knowor if anyone on > this site has info > I'd be very interested, take care, Celia > > > > > Hi, > > I have been reading the site for a few months and > have learned so > > very much. Thank you all for sharing your stories > and insight. > > > > I do not know for sure if I have this illness or > not. My son has an > > appointment with Dr. Cohen in March...I had hoped > to see him as well > > but as you all know he no longer takes adults. I > seem to be in the > > same position as hazelpone looking for someone to > take an adult. Is > > the Dr. Levine that I have heard talked about...is > he in Ann Arbor, > > MI. > > > > Also, has anyone heard of Dr. Shiffer from > Northwestern Memorial > > Hospital in Chicago? He is a neuromuscular doctor > that my > > neurologist has recommended. I have not heard of > him on the web > > site. > > > > My son, 9, was in the hospital twice in January. > He seemed to have > > developed asthma out of the blue and he is still > wheezing everyday. > > > Then on top of that after a exuberant kick ball > game last saturday > > he started limping. (But he doesn't remember > doing anything to his > > foot, in fact it is his left foot and he would > have been kicking > > with his right). After five days on crutches they > took x-rays. No > > problem with the bones, although it is swollen and > kind of red > > purple. > > > > It reminds me of what someone would describe gout > as. Very painful, > > etc...Poor, Jack has had one thing after another. > All of which has > > seemed not to be connected. The doctors in the > hospital even > > suggested that he wanted to be sick, because they > could not explain > > the chest pain he was having! Even though his > wheezing was so bad. > > But at one moment he would not be wheezing and a > new doctor would > > come in and listen to him...and look at me like I > was crazy and ask > > me if I knew what wheezing was...then a few > minutes later he would > > begin wheezing. > > > > It is really tough because I have not run into one > doctor who > > understand about mito. They don't know how to > work it up or even > > what to look for. > > > > I'm interested in the post that said the one > doctor in new york only > > knows of 44 patients with MNGE; because I think > that may be what me > > and my son have. I was diagnosed with multiple > sclerosis three > > years ago...(spots on my brain). Now the new > neuro is the one who > > thinks that it may be mito instead. My son has > had gastro problems > > since he was three months. I have had gastro > problems since I was > > five years old. But is gastro problems...ie. MNGE > that rare? > > > > I know this is really long (I just finally figured > out how to post a > > message)but I have been wanting to say this stuff > to people who know > > what I'm talking about! I have spoken to Laurie on > line...what a > > gift she is! > > > > Thanks for reading. > > > > Vivian > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Vivian, I didn't find a Dr. Levine on the U of M website or the AMA site, so that is why I wondered. I live in Michigan. vivianbryant5 wrote: > -Hey , > > I heard of someone else mention Dr. Levine. Maybe I got it wrong. > I thought they said that he was in Michigan but a far drive. I > probably got the name wrong...never mind. > > Thanks, > > Vivian > > -- In , <dgregori@w...> wrote: > >>Vivian, >> >>Do you know what did of doctor Dr. Levine is? I sure can't find >>him/her in Michigan if he/she is a neuro. >> >> >> >> >> >>>I do not know for sure if I have this illness or not. My son >> > has an > >>>appointment with Dr. Cohen in March...I had hoped to see him as >> > well > >>>but as you all know he no longer takes adults. I seem to be in >> > the > >>>same position as hazelpone looking for someone to take an >> > adult. Is > >>>the Dr. Levine that I have heard talked about...is he in Ann >> > Arbor, > >>>MI. >>> >> > > > 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 yes, when I have a stressful day at work (I have been doing temp jobs), or overdue it cleaning or driving I can sleep the next day almost the whole day. I slept last Friday from 8 pm until 8 pm on Saturday. I have begun to learn to limit the things I do like going out shopping alot or cleaning out the bedroom, etc for Friday night or Saturday because I know the next day I will have to sleep. I get throbbing in my eyes once in a while also. Don't really know what it is from. Back when I was 23, before all of this, my eye doctor said it was my left eye catching up with my right eye (my right eye is very bad for seeing). Well, I have a project I have been putting off a couple of weeks and now have to go thru tons of papers and sort thru them and pay the bills because they are do next week. Bye Oh, where are you from? found my way back on > > > > > > > Hi, > > > I have been reading the site for a few months and have learned so > > > very much. Thank you all for sharing your stories and insight. > > > > > > I do not know for sure if I have this illness or not. My son > has an > > > appointment with Dr. Cohen in March...I had hoped to see him as > well > > > but as you all know he no longer takes adults. I seem to be in > the > > > same position as hazelpone looking for someone to take an > adult. Is > > > the Dr. Levine that I have heard talked about...is he in Ann > Arbor, > > > MI. > > > > > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > > > Hospital in Chicago? He is a neuromuscular doctor that my > > > neurologist has recommended. I have not heard of him on the web > > > site. > > > > > > My son, 9, was in the hospital twice in January. He seemed to > have > > > developed asthma out of the blue and he is still wheezing > everyday. > > > Then on top of that after a exuberant kick ball game last > saturday > > > he started limping. (But he doesn't remember doing anything to > his > > > foot, in fact it is his left foot and he would have been kicking > > > with his right). After five days on crutches they took x-rays. > No > > > problem with the bones, although it is swollen and kind of red > > > purple. > > > > > > It reminds me of what someone would describe gout as. Very > painful, > > > etc...Poor, Jack has had one thing after another. All of which > has > > > seemed not to be connected. The doctors in the hospital even > > > suggested that he wanted to be sick, because they could not > explain > > > the chest pain he was having! Even though his wheezing was so > bad. > > > But at one moment he would not be wheezing and a new doctor would > > > come in and listen to him...and look at me like I was crazy and > ask > > > me if I knew what wheezing was...then a few minutes later he > would > > > begin wheezing. > > > > > > It is really tough because I have not run into one doctor who > > > understand about mito. They don't know how to work it up or even > > > what to look for. > > > > > > I'm interested in the post that said the one doctor in new york > only > > > knows of 44 patients with MNGE; because I think that may be what > me > > > and my son have. I was diagnosed with multiple sclerosis three > > > years ago...(spots on my brain). Now the new neuro is the one > who > > > thinks that it may be mito instead. My son has had gastro > problems > > > since he was three months. I have had gastro problems since I > was > > > five years old. But is gastro problems...ie. MNGE that rare? > > > > > > I know this is really long (I just finally figured out how to > post a > > > message)but I have been wanting to say this stuff to people who > know > > > what I'm talking about! I have spoken to Laurie on line...what a > > > gift she is! > > > > > > Thanks for reading. > > > > > > Vivian > > > > > > > > > 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. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Vivian, I also have the problem of losing words. I seem to have more of a problem when I am tired or don't feel well, as you stated. I also have a harder time remembering words after I have a complex migraine. Those have been happening a lot lately. I can also think of many words to describe something, but just not that word. That doesn't go over well when I have parent/teacher conferences! Smiles, a Two things that you said hit right on for me. When I get tired or I don't feel well, I lose words. I point or describe what I want, ie. the thing you drink from that holds liquid, (cup). I can use a ton of words for one that I can't remember. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Vivian and a I have problems with word finding, too. When I went off the supplements before my last muscle biopsy, it got really bad. noticed a big improvement after going back on for 24 hours. I also have problems with spelling when tired. There are times I can't even come up with the beginning letter and I teach phonics. laurie Reply-To: Date: Sun, 16 Feb 2003 17:26:50 -0600 To: Subject: Re: found my way back on Vivian, I also have the problem of losing words. I seem to have more of a problem when I am tired or don't feel well, as you stated. I also have a harder time remembering words after I have a complex migraine. Those have been happening a lot lately. I can also think of many words to describe something, but just not that word. That doesn't go over well when I have parent/teacher conferences! Smiles, a Two things that you said hit right on for me. When I get tired or I don't feel well, I lose words. I point or describe what I want, ie. the thing you drink from that holds liquid, (cup). I can use a ton of words for one that I can't remember. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Vivian I'm doing better each day. I have sores on my skin from the immobilizer rubbing, so will be glad to be able to get rid of it (3-5 more weeks). My son and his fiancee picked me up and out to dinner today. That was a real treat. laurie " Reply-To: Date: Sun, 16 Feb 2003 20:20:32 -0000 To: Subject: Re: found my way back on Hey Laurie, It is good to finally be able to communicate. I hope you are feeling better soon, Vivian > Vivian > > I'm glad you are able to post now. > > laurie > > From: " vivianbryant5 <schumacher53@a...> " <schumacher53@a...> > Reply-To: > Date: Sun, 16 Feb 2003 04:10:38 -0000 > To: > Subject: found my way back on > > > Hi, > I have been reading the site for a few months and have learned so > very much. Thank you all for sharing your stories and insight. > > I do not know for sure if I have this illness or not. My son has an > appointment with Dr. Cohen in March...I had hoped to see him as well > but as you all know he no longer takes adults. I seem to be in the > same position as hazelpone looking for someone to take an adult. Is > the Dr. Levine that I have heard talked about...is he in Ann Arbor, > MI. > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > Hospital in Chicago? He is a neuromuscular doctor that my > neurologist has recommended. I have not heard of him on the web > site. > > My son, 9, was in the hospital twice in January. He seemed to have > developed asthma out of the blue and he is still wheezing everyday. > Then on top of that after a exuberant kick ball game last saturday > he started limping. (But he doesn't remember doing anything to his > foot, in fact it is his left foot and he would have been kicking > with his right). After five days on crutches they took x-rays. No > problem with the bones, although it is swollen and kind of red > purple. > > It reminds me of what someone would describe gout as. Very painful, > etc...Poor, Jack has had one thing after another. All of which has > seemed not to be connected. The doctors in the hospital even > suggested that he wanted to be sick, because they could not explain > the chest pain he was having! Even though his wheezing was so bad. > But at one moment he would not be wheezing and a new doctor would > come in and listen to him...and look at me like I was crazy and ask > me if I knew what wheezing was...then a few minutes later he would > begin wheezing. > > It is really tough because I have not run into one doctor who > understand about mito. They don't know how to work it up or even > what to look for. > > I'm interested in the post that said the one doctor in new york only > knows of 44 patients with MNGE; because I think that may be what me > and my son have. I was diagnosed with multiple sclerosis three > years ago...(spots on my brain). Now the new neuro is the one who > thinks that it may be mito instead. My son has had gastro problems > since he was three months. I have had gastro problems since I was > five years old. But is gastro problems...ie. MNGE that rare? > > I know this is really long (I just finally figured out how to post a > message)but I have been wanting to say this stuff to people who know > what I'm talking about! I have spoken to Laurie on line...what a > gift she is! > > Thanks for reading. > > Vivian > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Laurie, I'm glad to read that you are improving although I am sure you are tired of the immobilizer and the wounds it's causing. Sounds like you have a long wait thought. It was nice to be taken out to dinner I'm sure. How are those wedding plans coming. Alice < Laureta Fitzgerald wrote: I'm doing better each day. I have sores on my skin from the immobilizer rubbing, so will be glad to be able to get rid of it (3-5 more weeks). My son and his fiancee picked me up and out to dinner today. That was a real treat.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Alice They have been spending time on the honeymoon to Ireland, more than the wedding. Since it is to be very small, it will come together - no wedding gown or decorations. got Kent a Claddagh ring while in Buffalo, NY this past week. Instead of additional wedding bands, the are going to turn their Claddaugh rings around in the Celtic tradition. laurie Reply-To: Date: Mon, 17 Feb 2003 07:01:32 -0800 (PST) To: Subject: Re: found my way back on Laurie, I'm glad to read that you are improving although I am sure you are tired of the immobilizer and the wounds it's causing. Sounds like you have a long wait thought. It was nice to be taken out to dinner I'm sure. How are those wedding plans coming. Alice < Laureta Fitzgerald wrote: I'm doing better each day. I have sores on my skin from the immobilizer rubbing, so will be glad to be able to get rid of it (3-5 more weeks). My son and his fiancee picked me up and out to dinner today. That was a real treat.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 This sounds very interesting Laurie. I' mgoing to look forward to reading more as this wedding story unfolds. Now I've got to go look up this Celtic custom. The honeymoon trip to Ireland sounds wonderful too! <smile> Alice <Laureta Fitzgerald wrote: got Kent a Claddagh ring while in Buffalo, NY this past week. Instead of additional wedding bands, the are going to turn their Claddaugh rings around in the Celtic tradition.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 a, I have not taken provigil in a long time because although it helps with the fatigue, I thought for a while ultimately it makes me worse because what my body was really demanding was rest. But I just could not take another day of lack of energy to do anything. I took a pill today...and amazingly I feel more alert than I have in a long time. THE WORDS ARE BACK! And enough energy to really interact with my kids. So for today, I take the moment. By the way, where are you from? Vivian > Vivian, > I also have the problem of losing words. I seem to have more of > a problem when I am tired or don't feel well, as you stated. I also have > a harder time remembering words after I have a complex migraine. Those > have been happening a lot lately. I can also think of many words to > describe something, but just not that word. That doesn't go over well > when I have parent/teacher conferences! > > Smiles, > a > > > Two things that you said hit right on for me. When I get tired or I > don't feel well, I lose words. I point or describe what I want, ie. > the thing you drink from that holds liquid, (cup). I can use a ton > of words for one that I can't remember. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Laurie, Which supplements do you think helps? Do you battle fatigue in general? Vivian > Vivian and a > > I have problems with word finding, too. When I went off the supplements > before my last muscle biopsy, it got really bad. noticed a big > improvement after going back on for 24 hours. I also have problems with > spelling when tired. There are times I can't even come up with the beginning > letter and I teach phonics. > > laurie > > From: a C Koch <kckoch76@j...> > Reply-To: > Date: Sun, 16 Feb 2003 17:26:50 -0600 > To: > Subject: Re: found my way back on > > > Vivian, > I also have the problem of losing words. I seem to have more of > a problem when I am tired or don't feel well, as you stated. I also have > a harder time remembering words after I have a complex migraine. Those > have been happening a lot lately. I can also think of many words to > describe something, but just not that word. That doesn't go over well > when I have parent/teacher conferences! > > Smiles, > a > > > Two things that you said hit right on for me. When I get tired or I > don't feel well, I lose words. I point or describe what I want, ie. > the thing you drink from that holds liquid, (cup). I can use a ton > of words for one that I can't remember. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 -Janet, I am from Rolling Meadows which is a northwest suburb of Chicago. I grew up in Ann Arbor Michigan. Vivian -- In , " Janet Sample " <jsample@n...> wrote: > yes, when I have a stressful day at work (I have been doing temp jobs), or > overdue it cleaning or driving I can sleep the next day almost the whole > day. I slept last Friday from 8 pm until 8 pm on Saturday. > > I have begun to learn to limit the things I do like going out shopping alot > or cleaning out the bedroom, etc for Friday night or Saturday because I know > the next day I will have to sleep. > > I get throbbing in my eyes once in a while also. Don't really know what it > is from. Back when I was 23, before all of this, my eye doctor said it was > my left eye catching up with my right eye (my right eye is very bad for > seeing). > > Well, I have a project I have been putting off a couple of weeks and now > have to go thru tons of papers and sort thru them and pay the bills because > they are do next week. > > Bye > > Oh, where are you from? > found my way back on > > > > > > > > > > Hi, > > > > I have been reading the site for a few months and have learned so > > > > very much. Thank you all for sharing your stories and insight. > > > > > > > > I do not know for sure if I have this illness or not. My son > > has an > > > > appointment with Dr. Cohen in March...I had hoped to see him as > > well > > > > but as you all know he no longer takes adults. I seem to be in > > the > > > > same position as hazelpone looking for someone to take an > > adult. Is > > > > the Dr. Levine that I have heard talked about...is he in Ann > > Arbor, > > > > MI. > > > > > > > > Also, has anyone heard of Dr. Shiffer from Northwestern Memorial > > > > Hospital in Chicago? He is a neuromuscular doctor that my > > > > neurologist has recommended. I have not heard of him on the web > > > > site. > > > > > > > > My son, 9, was in the hospital twice in January. He seemed to > > have > > > > developed asthma out of the blue and he is still wheezing > > everyday. > > > > Then on top of that after a exuberant kick ball game last > > saturday > > > > he started limping. (But he doesn't remember doing anything to > > his > > > > foot, in fact it is his left foot and he would have been kicking > > > > with his right). After five days on crutches they took x- rays. > > No > > > > problem with the bones, although it is swollen and kind of red > > > > purple. > > > > > > > > It reminds me of what someone would describe gout as. Very > > painful, > > > > etc...Poor, Jack has had one thing after another. All of which > > has > > > > seemed not to be connected. The doctors in the hospital even > > > > suggested that he wanted to be sick, because they could not > > explain > > > > the chest pain he was having! Even though his wheezing was so > > bad. > > > > But at one moment he would not be wheezing and a new doctor would > > > > come in and listen to him...and look at me like I was crazy and > > ask > > > > me if I knew what wheezing was...then a few minutes later he > > would > > > > begin wheezing. > > > > > > > > It is really tough because I have not run into one doctor who > > > > understand about mito. They don't know how to work it up or even > > > > what to look for. > > > > > > > > I'm interested in the post that said the one doctor in new york > > only > > > > knows of 44 patients with MNGE; because I think that may be what > > me > > > > and my son have. I was diagnosed with multiple sclerosis three > > > > years ago...(spots on my brain). Now the new neuro is the one > > who > > > > thinks that it may be mito instead. My son has had gastro > > problems > > > > since he was three months. I have had gastro problems since I > > was > > > > five years old. But is gastro problems...ie. MNGE that rare? > > > > > > > > I know this is really long (I just finally figured out how to > > post a > > > > message)but I have been wanting to say this stuff to people who > > know > > > > what I'm talking about! I have spoken to Laurie on line...what a > > > > gift she is! > > > > > > > > Thanks for reading. > > > > > > > > Vivian > > > > > > > > > > > > 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. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Vivian I take many meds and suppliments to address specific things like the myoclonus, diabetes and so on. If I could have just two supplements, I'd pick the Q-gel and Carnitor (actually script). I certainly battle fatique everyday. I have learned to pick the things which are most important to me. One of the best things that I have done is to include adaptive equipment in my life. I have used a scooter (except in the house) for almost 10 years. I have had a lift or ramp in a minivan to transport it. I use a bath chair, hospital bed and raised toilet seat. I also use a stool when cooking or doing dishes. I also use a crutch when walking for safety. laurie " Reply-To: Date: Mon, 17 Feb 2003 19:46:56 -0000 To: Subject: Re: found my way back on Laurie, Which supplements do you think helps? Do you battle fatigue in general? Vivian > Vivian and a > > I have problems with word finding, too. When I went off the supplements > before my last muscle biopsy, it got really bad. noticed a big > improvement after going back on for 24 hours. I also have problems with > spelling when tired. There are times I can't even come up with the beginning > letter and I teach phonics. > > laurie > > From: a C Koch <kckoch76@j...> > Reply-To: > Date: Sun, 16 Feb 2003 17:26:50 -0600 > To: > Subject: Re: found my way back on > > > Vivian, > I also have the problem of losing words. I seem to have more of > a problem when I am tired or don't feel well, as you stated. I also have > a harder time remembering words after I have a complex migraine. Those > have been happening a lot lately. I can also think of many words to > describe something, but just not that word. That doesn't go over well > when I have parent/teacher conferences! > > Smiles, > a > > > Two things that you said hit right on for me. When I get tired or I > don't feel well, I lose words. I point or describe what I want, ie. > the thing you drink from that holds liquid, (cup). I can use a ton > of words for one that I can't remember. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Vivian, I am from Cedar Rapids, Iowa. I am by the University Hospitals and Clinics, a large teaching hospital, but mitochondrial disorders are not very well known there. I was 14 when I first started having noticeable problems (well, I can go back now and see weakness issues in the past). At 18, I had a muscle biopsy and was diagnosed with mitochondrial cytopathy, COX deficiency, complex I and II. But, I still have doctors debating the diagnosis, as they say I don't " fit the pattern " . As well all know, there really is not set pattern! I taught special education for three years, but full time was too much on my body. So, I subbed in the beginning of this year and am now a reading associate/teacher at the elementary that I attended as a child. This is supposed to be 2 1/2 hours a day, but as all teachers know, it turns into more than that! I am now 26 and need walking aids/wheelchair. I am glad that the words are back with the provigil, but do make sure it isn't doing more damage to your body like you first thought. Smiles, a a, I have not taken provigil in a long time because although it helps with the fatigue, I thought for a while ultimately it makes me worse because what my body was really demanding was rest. But I just could not take another day of lack of energy to do anything. I took a pill today...and amazingly I feel more alert than I have in a long time. THE WORDS ARE BACK! And enough energy to really interact with my kids. So for today, I take the moment. By the way, where are you from? Vivian Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 Yes, I have been thru Rolling Meadows. My six cousins and my aunt & uncle live in the Chicago area. My aunt & uncle still live in a southern suburb Tinley Park as do two of my cousins. The others are in Oak Park and then Mundelein. My sister and her husband lived near DesPlaines when they were first married. Near I believe Nile. Anyway, she went to work 20 miles south (cannot remember the town but it was down near Hwy 55), and he went 20 miles north to Mundelein. Well, that is all for me tonight. I am trying to go thru these 100 odd posts. Janet Sample found my way back on > > > > > > > > > > > > > Hi, > > > > > I have been reading the site for a few months and have > learned so > > > > > very much. Thank you all for sharing your stories and > insight. > > > > > > > > > > I do not know for sure if I have this illness or not. My son > > > has an > > > > > appointment with Dr. Cohen in March...I had hoped to see him > as > > > well > > > > > but as you all know he no longer takes adults. I seem to be > in > > > the > > > > > same position as hazelpone looking for someone to take an > > > adult. Is > > > > > the Dr. Levine that I have heard talked about...is he in Ann > > > Arbor, > > > > > MI. > > > > > > > > > > Also, has anyone heard of Dr. Shiffer from Northwestern > Memorial > > > > > Hospital in Chicago? He is a neuromuscular doctor that my > > > > > neurologist has recommended. I have not heard of him on the > web > > > > > site. > > > > > > > > > > My son, 9, was in the hospital twice in January. He seemed to > > > have > > > > > developed asthma out of the blue and he is still wheezing > > > everyday. > > > > > Then on top of that after a exuberant kick ball game last > > > saturday > > > > > he started limping. (But he doesn't remember doing anything > to > > > his > > > > > foot, in fact it is his left foot and he would have been > kicking > > > > > with his right). After five days on crutches they took x- > rays. > > > No > > > > > problem with the bones, although it is swollen and kind of > red > > > > > purple. > > > > > > > > > > It reminds me of what someone would describe gout as. Very > > > painful, > > > > > etc...Poor, Jack has had one thing after another. All of > which > > > has > > > > > seemed not to be connected. The doctors in the hospital even > > > > > suggested that he wanted to be sick, because they could not > > > explain > > > > > the chest pain he was having! Even though his wheezing was so > > > bad. > > > > > But at one moment he would not be wheezing and a new doctor > would > > > > > come in and listen to him...and look at me like I was crazy > and > > > ask > > > > > me if I knew what wheezing was...then a few minutes later he > > > would > > > > > begin wheezing. > > > > > > > > > > It is really tough because I have not run into one doctor who > > > > > understand about mito. They don't know how to work it up or > even > > > > > what to look for. > > > > > > > > > > I'm interested in the post that said the one doctor in new > york > > > only > > > > > knows of 44 patients with MNGE; because I think that may be > what > > > me > > > > > and my son have. I was diagnosed with multiple sclerosis > three > > > > > years ago...(spots on my brain). Now the new neuro is the > one > > > who > > > > > thinks that it may be mito instead. My son has had gastro > > > problems > > > > > since he was three months. I have had gastro problems since > I > > > was > > > > > five years old. But is gastro problems...ie. MNGE that rare? > > > > > > > > > > I know this is really long (I just finally figured out how to > > > post a > > > > > message)but I have been wanting to say this stuff to people > who > > > know > > > > > what I'm talking about! I have spoken to Laurie on > line...what a > > > > > gift she is! > > > > > > > > > > Thanks for reading. > > > > > > > > > > Vivian > > > > > > > > > > > > > > > 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. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2003 Report Share Posted February 18, 2003 vivian, Glad you found your way here. Sorry to hear about all the problems you had with drs. Maybe once your son sees dr cohen and gets a diagnosis dr cohen might be willing to see you also, but dont know for sure. it does seem that he does see family members together sometimes. If not i hope you can find someone else- i know how frustrating it is. wish i knew more about the drs in your area- have you talked with someone at UMDF they might suggest someone. Im seeing dr shields at cleveland clinic in july and know hes no longer accepting any more patients. Took me a long time to find him and to get an appt with him. I live in virginia, so am traveling aways. I also dont have a clear diagnosis and have gotten other diagnosises that turned out to be misdiagnosises. I'm sorry to hear about your son's problems with breathing and his injury- it can be frustrating not knowing whats causing the problems and then for drs not to really look into them enough and brush them off as something minor or as faking it (ive had this alot even as a kid or that it was all in my head even though tests show physical probs). As for MNGIE, drs suggested that along with MELAS and a few others for me. the gi symptoms seem to happen with several mito diseases, not just MNGIE- i have alot of gi probs myself and so does most of the people on my mom's side. anyways, hope you find lots of help in this group of wonderful people. again, welcome and glad to have you with us. take care, adrienne Quote Link to comment Share on other sites More sharing options...
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