Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 I have just been diagnosed after much official testing at a memory disorder clinic to have mild to moderate cognitive deficits. It does not fit the Alzheimer or dementia profile at all at this time. But there is most certainly something wrong. Not the usual age related forgetfulness. Does anyone else have a "confirmed" memory disorder like this? I can not think. learn easily. concentrate or multitask. My IQ is very high they said. so it makes it hard to establish just how much I have lost. But this test will give us a base line. I have to have more done in 8 months. Would appreciate any comments from folks that have been officially diagnosed like this. Smiles, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 My mother had this diagnosis based on an MRI that showed enlarged ventricles and shrinking of the brain. The brain is the organ that requires the most energy. If that energy is depleted, then brain cells can die. She did not have the cognitive testing done. laurie > > Reply-To: > Date: Fri, 19 Mar 2004 16:31:44 -0500 > To: " Mitoldies " > > Subject: memory disorder > > I have just been diagnosed after much official testing at a memory disorder > clinic to have mild to moderate cognitive deficits. It does not fit the > Alzheimer or dementia profile at all at this time. But there is most certainly > something wrong. Not the usual age related forgetfulness. Does anyone else > have a " confirmed " memory disorder like this? I can not think. learn easily. > concentrate or multitask. My IQ is very high they said. so it makes it hard > to establish just how much I have lost. But this test will give us a base > line. I have to have more done in 8 months. Would appreciate any comments > from folks that have been officially diagnosed like this. > > Smiles, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Hi Laurie, Did your mom complain of not being able to process thoughts and not remember? Only certain areas are effected they said, and it is patchy, not hemispherical or focal. Many of my testing areas still showed higher than average. This is really concerning me. I wonder if they will end up doing an MRI on me? Smiles, memory disorder > > > > I have just been diagnosed after much official testing at a memory disorder > > clinic to have mild to moderate cognitive deficits. It does not fit the > > Alzheimer or dementia profile at all at this time. But there is most certainly > > something wrong. Not the usual age related forgetfulness. Does anyone else > > have a " confirmed " memory disorder like this? I can not think. learn easily. > > concentrate or multitask. My IQ is very high they said. so it makes it hard > > to establish just how much I have lost. But this test will give us a base > > line. I have to have more done in 8 months. Would appreciate any comments > > from folks that have been officially diagnosed like this. > > > > Smiles, > > > > > > > > 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 19, 2004 Report Share Posted March 19, 2004 My mom's deficits were scattered. Her biggest problem was with word finding and it was made worse with fatigue, too much physical activity or stress. I have the same word finding problems under these conditions. She also had trouble with memory, especially new learning. She didn't have any great increase once on the supplements until the past few months, especially after some nutritional issues. Hugs, laurie > > Reply-To: > Date: Fri, 19 Mar 2004 17:55:54 -0500 > To: > > Subject: Re: memory disorder > > Hi Laurie, > > Did your mom complain of not being able to process thoughts and not > remember? Only certain areas are effected they said, and it is patchy, not > hemispherical or focal. Many of my testing areas still showed higher than > average. > This is really concerning me. I wonder if they will end up doing an MRI on > me? > > Smiles, > > > > memory disorder >>> >>> I have just been diagnosed after much official testing at a memory > disorder >>> clinic to have mild to moderate cognitive deficits. It does not fit the >>> Alzheimer or dementia profile at all at this time. But there is most > certainly >>> something wrong. Not the usual age related forgetfulness. Does anyone > else >>> have a " confirmed " memory disorder like this? I can not think. learn > easily. >>> concentrate or multitask. My IQ is very high they said. so it makes it > hard >>> to establish just how much I have lost. But this test will give us a > base >>> line. I have to have more done in 8 months. Would appreciate any > comments >>> from folks that have been officially diagnosed like this. >>> >>> Smiles, >>> >>> >> >> >> >> 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 19, 2004 Report Share Posted March 19, 2004 thank you Laurie, it does sound much more similar than I would like:( How bad did it end up? I have been saying for the last few years (half joking, half truth) I coundn't learn my own name now if it was changed! I just had some serious skin cancer surgery over a month ago (after the memory test though) and then ended up having to have 2 rounds of antibiotic, then after that I got the diagnosis of the memory deficits. I ended up in such a marathon fatigue mode that I could barely lift my head off the floor. Haven't had one of those in a very long time. I am very sorry to hear that your mom has died, this must be an incredibly hard time for you. Bless you for taking the time out to try to help me. Smiles, memory disorder > >>> > >>> I have just been diagnosed after much official testing at a memory > > disorder > >>> clinic to have mild to moderate cognitive deficits. It does not fit the > >>> Alzheimer or dementia profile at all at this time. But there is most > > certainly > >>> something wrong. Not the usual age related forgetfulness. Does anyone > > else > >>> have a " confirmed " memory disorder like this? I can not think. learn > > easily. > >>> concentrate or multitask. My IQ is very high they said. so it makes it > > hard > >>> to establish just how much I have lost. But this test will give us a > > base > >>> line. I have to have more done in 8 months. Would appreciate any > > comments > >>> from folks that have been officially diagnosed like this. > >>> > >>> Smiles, > >>> > >>> > >> > >> > >> > >> 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 19, 2004 Report Share Posted March 19, 2004 My mom was 83 when she died. Prior to her strokes I visited with her 3-4 times per week. We could carry on a conversation, although coming up with the word she couldn't find was sometimes frustrating and sometimes comical. She had been in the nursing home for less than a year, but made many friends from the residents, nursing staff, laundry people and cleaning people. Even though her memory was impaired, she touched the lives of many people in spite of it and was truly the beautiful wonderful person she always was. I guess what I'm trying to say is that even with her increasing memory loss, she was still the same person. laurie > > Reply-To: > Date: Fri, 19 Mar 2004 20:28:51 -0500 > To: > > Subject: Re: memory disorder > > thank you Laurie, > > it does sound much more similar than I would like:( > > How bad did it end up? I have been saying for the last few years (half > joking, half truth) I coundn't learn my own name now if it was changed! > > I just had some serious skin cancer surgery over a month ago (after the > memory test though) and then ended up having to have 2 rounds of antibiotic, > then after that I got the diagnosis of the memory deficits. I ended up in > such a marathon fatigue mode that I could barely lift my head off the floor. > Haven't had one of those in a very long time. > > I am very sorry to hear that your mom has died, this must be an incredibly > hard time for you. Bless you for taking the time out to try to help me. > > Smiles, > > memory disorder >>>>> >>>>> I have just been diagnosed after much official testing at a memory >>> disorder >>>>> clinic to have mild to moderate cognitive deficits. It does not fit > the >>>>> Alzheimer or dementia profile at all at this time. But there is most >>> certainly >>>>> something wrong. Not the usual age related forgetfulness. Does anyone >>> else >>>>> have a " confirmed " memory disorder like this? I can not think. learn >>> easily. >>>>> concentrate or multitask. My IQ is very high they said. so it makes > it >>> hard >>>>> to establish just how much I have lost. But this test will give us a >>> base >>>>> line. I have to have more done in 8 months. Would appreciate any >>> comments >>>>> from folks that have been officially diagnosed like this. >>>>> >>>>> Smiles, >>>>> >>>>> >>>> >>>> >>>> >>>> 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 19, 2004 Report Share Posted March 19, 2004 , I have a hard time remembering the names of things and finding the correct words when I am tired or frustrated. My 11 year old son had an episode last year where he forgot his cats names and how to play his gameboy. According the the doctor who diagnosed my sister and our MELAS, memory loss and cognitive learning are a part of the MELAS. When I did baseline testing in 1997 they asked me all kinds of questions about names of things and who was the president and stuff. So, I'd say it is part of the mito disease you have. I am not sure how bad it will get although I know I noticed my sister saying the wrong words shortly after she had a stroke and was diagnosed. 4 months later after she came out of a two week coma I noticed the same. Even a week before she died she was fine being able to communicate. She was still able to get her thoughts across even if she would say works instead of water and such. Janet Sample memory disorder I have just been diagnosed after much official testing at a memory disorder clinic to have mild to moderate cognitive deficits. It does not fit the Alzheimer or dementia profile at all at this time. But there is most certainly something wrong. Not the usual age related forgetfulness. Does anyone else have a "confirmed" memory disorder like this? I can not think. learn easily. concentrate or multitask. My IQ is very high they said. so it makes it hard to establish just how much I have lost. But this test will give us a base line. I have to have more done in 8 months. Would appreciate any comments from folks that have been officially diagnosed like this. Smiles, 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 22, 2004 Report Share Posted March 22, 2004 I am going through a similar thing, . I had my first clear day in months on Friday - big difference. One thing was that I had my lactate, pyruvate, CK and ammonia checked, and my ammonia was high. I understand that can cause brain fog. It is funny (I have a sick sense of humor) to be able to function relatively well, but have very poor short-term memory. I went to a neuro-psychologist and they found that there were deficits for me - I have a high IQ too, but they could see that there were inconsistencies in the results that showed memory loss and impairment. Also had an absence seizure in front of the psych tech, that was funny too. I can learn new things, do my work, but simple things like remembering my kids' names or what I was doing are a problem. I am waiting for Dr. P from the town MDA clinic or a nurse to call back about the high ammonia, unfortunately I couldn't go to my MDA clinic appointment last week because I forgot to get a referral. A shame because my youngest son was supposed to go too... I sure wish I could figure out why I had that one good day Take care, RH > > > My mom's deficits were scattered. Her biggest problem was with word finding > and it was made worse with fatigue, too much physical activity or stress. I > have the same word finding problems under these conditions. She also had > trouble with memory, especially new learning. She didn't have any great > increase once on the supplements until the past few months, especially after > some nutritional issues. > > Hugs, > laurie > > > From: " Young " > > Reply-To: > > Date: Fri, 19 Mar 2004 17:55:54 -0500 > > To: > > > Subject: Re: memory disorder > > > > Hi Laurie, > > > > Did your mom complain of not being able to process thoughts and not > > remember? Only certain areas are effected they said, and it is patchy, not > > hemispherical or focal. Many of my testing areas still showed higher than > > average. > > This is really concerning me. I wonder if they will end up doing an MRI on > > me? > > > > Smiles, > > > > > > > > memory disorder > >>> > >>> I have just been diagnosed after much official testing at a memory > > disorder > >>> clinic to have mild to moderate cognitive deficits. It does not fit the > >>> Alzheimer or dementia profile at all at this time. But there is most > > certainly > >>> something wrong. Not the usual age related forgetfulness. Does anyone > > else > >>> have a " confirmed " memory disorder like this? I can not think. learn > > easily. > >>> concentrate or multitask. My IQ is very high they said. so it makes it > > hard > >>> to establish just how much I have lost. But this test will give us a > > base > >>> line. I have to have more done in 8 months. Would appreciate any > > comments > >>> from folks that have been officially diagnosed like this. > >>> > >>> Smiles, > >>> > >>> > >> > >> > >> > >> 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 22, 2004 Report Share Posted March 22, 2004 That is very interesting that you are experiencing similar things. I can't say as that I feel like I am in a brain fog though. I don't seem to have problems with the kind of forgetfulness tht lots of people complain of. I am having problems following stories,for one thing. Like during the test they told me a 3 or 4 sentence story and I was suppose to repeat back the details of it, and I could barely tell any of it. That is very typical of what I am experiencing. If I am in a group of people and one is talking I can't seem to understand what they are talking about if there is any distraction at all. I also got lost going to my hairdresser' 2 months in a row, couldn't remember what street to turn on. But yet the 2nd month I remembered that I had the same problem the month before!??? That incident was what made my doctor send me to the clinic to be tested. Scary. Smiles, > > > Date: 2004/03/22 Mon PM 03:33:38 EST > To: > Subject: Re: memory disorder > > I am going through a similar thing, . I had my first clear > day in months on Friday - big difference. One thing was that I had > my lactate, pyruvate, CK and ammonia checked, and my ammonia was > high. I understand that can cause brain fog. > > It is funny (I have a sick sense of humor) to be able to function > relatively well, but have very poor short-term memory. I went to a > neuro-psychologist and they found that there were deficits for me - I > have a high IQ too, but they could see that there were > inconsistencies in the results that showed memory loss and > impairment. Also had an absence seizure in front of the psych tech, > that was funny too. I can learn new things, do my work, but simple > things like remembering my kids' names or what I was doing are a > problem. > > I am waiting for Dr. P from the town MDA clinic or a nurse to > call back about the high ammonia, unfortunately I couldn't go to my > MDA clinic appointment last week because I forgot to get a referral. > A shame because my youngest son was supposed to go too... > > I sure wish I could figure out why I had that one good day > > Take care, > RH > > > > > > > > > My mom's deficits were scattered. Her biggest problem was with word > finding > > and it was made worse with fatigue, too much physical activity or > stress. I > > have the same word finding problems under these conditions. She > also had > > trouble with memory, especially new learning. She didn't have any > great > > increase once on the supplements until the past few months, > especially after > > some nutritional issues. > > > > Hugs, > > laurie > > > > > From: " Young " > > > Reply-To: > > > Date: Fri, 19 Mar 2004 17:55:54 -0500 > > > To: > > > > Subject: Re: memory disorder > > > > > > Hi Laurie, > > > > > > Did your mom complain of not being able to process thoughts and > not > > > remember? Only certain areas are effected they said, and it is > patchy, not > > > hemispherical or focal. Many of my testing areas still showed > higher than > > > average. > > > This is really concerning me. I wonder if they will end up doing > an MRI on > > > me? > > > > > > Smiles, > > > > > > > > > > > > memory disorder > > >>> > > >>> I have just been diagnosed after much official testing at a > memory > > > disorder > > >>> clinic to have mild to moderate cognitive deficits. It does > not fit the > > >>> Alzheimer or dementia profile at all at this time. But there is > most > > > certainly > > >>> something wrong. Not the usual age related forgetfulness. Does > anyone > > > else > > >>> have a " confirmed " memory disorder like this? I can not think. > learn > > > easily. > > >>> concentrate or multitask. My IQ is very high they said. so it > makes it > > > hard > > >>> to establish just how much I have lost. But this test will > give us a > > > base > > >>> line. I have to have more done in 8 months. Would appreciate > any > > > comments > > >>> from folks that have been officially diagnosed like this. > > >>> > > >>> Smiles, > > >>> > > >>> > > >> > > >> > > >> > > >> 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 22, 2004 Report Share Posted March 22, 2004 Thanks for sharing your experiences about brain/memory function. It was good to hear others describe the memory/concentration problems similar to mine. Especially not being able to understand conversation if there is a distraction. If two people are talking to me at the same time, it can be very difficult, almost painful to endure, and I can't process either one. Drives me wild. I always thought it was that I had sensitive hearing. Also, the multitasking think is tough. I can do a lot of things well, but one at a time, please. I sometimes need a second or two to find a word, but usually it is not worse than that. I loved the comment about being able to remember that/what you could not remember. So true. Names have always been a problem for me, ever since I can remember (lol)....at least 50 years. With the exception of the name thing, which is pretty constant, I find my mental function is very unpredictable. Some hours/days I do great. Other times I know I am low, and just try not to put myself in a position where I will be taxed. But, I always know if I am clicking or not. I always remember that I did not know what I should have. And frequently, later, I can remember it again. (Except for names - always been really really hard for me). I guess different parts of the brain are involved. I think the QGel is helping this brain problem somewhat. Also, recently I drink a cup of coffee when I am low on mental energy, and to my surprise, that seems to make me sharper mentally sometimes. I use coffee like a drug, never too much, only when I need it. I have had these problems for many years, and while it is trying, I can still go out an do my stuff most days. (Have to bluff and cover up sometimes, but not to bad) The bad times seem a little worse now, but not that much. I am optimistic that it may not get worse. One more thing. For me, restricting my carbs seems to help my mental function. My mind gets really tired/cloudy after I eat bread, for example. I have tried eating the low glycemic carbs, but I definitely feel better when I dont eat many carbs at all. I KNOW it is not what the mito docs recommend. I discovered this before I was diagnosed, and do not understand how this fits into the mito theory. Maybe my metabolic glitch is in the carb conversion chain. I dont know, but more protein seems to agree with me. So much to learn, to try to manage and optimize our condition. It is good to hear from others who are experiencing similar things. Sunny That is very interesting that you are experiencing similar things. I can't say as that I feel like I am in a brain fog though. I don't seem to have problems with the kind of forgetfulness tht lots of people complain of. I am having problems following stories,for one thing. Like during the test they told me a 3 or 4 sentence story and I was suppose to repeat back the details of it, and I could barely tell any of it. That is very typical of what I am experiencing. If I am in a group of people and one is talking I can't seem to understand what they are talking about if there is any distraction at all. I also got lost going to my hairdresser' 2 months in a row, couldn't remember what street to turn on. But yet the 2nd month I remembered that I had the same problem the month before!??? That incident was what made my doctor send me to the clinic to be tested. > Scary. > > Smiles, > > > > > > > Date: 2004/03/22 Mon PM 03:33:38 EST > > To: > > Subject: Re: memory disorder > > > > I am going through a similar thing, . I had my first clear > > day in months on Friday - big difference. One thing was that I had > > my lactate, pyruvate, CK and ammonia checked, and my ammonia was > > high. I understand that can cause brain fog. > > > > It is funny (I have a sick sense of humor) to be able to function > > relatively well, but have very poor short-term memory. I went to a > > neuro-psychologist and they found that there were deficits for me - > I > > have a high IQ too, but they could see that there were > > inconsistencies in the results that showed memory loss and > > impairment. Also had an absence seizure in front of the psych tech, > > that was funny too. I can learn new things, do my work, but simple > > things like remembering my kids' names or what I was doing are a > > problem. > > > > I am waiting for Dr. P from the town MDA clinic or a nurse to > > call back about the high ammonia, unfortunately I couldn't go to my > > MDA clinic appointment last week because I forgot to get a > referral. > > A shame because my youngest son was supposed to go too... > > > > I sure wish I could figure out why I had that one good day > > > > Take care, > > RH > > > > > > > > > > > > > > > My mom's deficits were scattered. Her biggest problem was with > word > > finding > > > and it was made worse with fatigue, too much physical activity or > > stress. I > > > have the same word finding problems under these conditions. She > > also had > > > trouble with memory, especially new learning. She didn't have any > > great > > > increase once on the supplements until the past few months, > > especially after > > > some nutritional issues. > > > > > > Hugs, > > > laurie > > > > > > > From: " Young " > > > > Reply-To: > > > > Date: Fri, 19 Mar 2004 17:55:54 -0500 > > > > To: > > > > > Subject: Re: memory disorder > > > > > > > > Hi Laurie, > > > > > > > > Did your mom complain of not being able to process thoughts and > > not > > > > remember? Only certain areas are effected they said, and it is > > patchy, not > > > > hemispherical or focal. Many of my testing areas still showed > > higher than > > > > average. > > > > This is really concerning me. I wonder if they will end up > doing > > an MRI on > > > > me? > > > > > > > > Smiles, > > > > > > > > > > > > > > > > memory disorder > > > >>> > > > >>> I have just been diagnosed after much official testing at a > > memory > > > > disorder > > > >>> clinic to have mild to moderate cognitive deficits. It does > > not fit the > > > >>> Alzheimer or dementia profile at all at this time. But there > is > > most > > > > certainly > > > >>> something wrong. Not the usual age related forgetfulness. Does > > anyone > > > > else > > > >>> have a " confirmed " memory disorder like this? I can not > think. > > learn > > > > easily. > > > >>> concentrate or multitask. My IQ is very high they said. so > it > > makes it > > > > hard > > > >>> to establish just how much I have lost. But this test will > > give us a > > > > base > > > >>> line. I have to have more done in 8 months. Would appreciate > > any > > > > comments > > > >>> from folks that have been officially diagnosed like this. > > > >>> > > > >>> Smiles, > > > >>> > > > >>> > > > >> > > > >> > > > >> > > > >> 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 23, 2004 Report Share Posted March 23, 2004 Sunny I was told to eat the kind of diet that makes me feel the best. There doesn't seem to be much rhyme or reason as to what people with mito should eat. I need lots of protein. We are all different. You should know that the brain uses glucose for fuel. Have you tried raw cornstarch which is metabolized very slowly. laurie > From: z39z@... > Reply-To: > Date: Mon, 22 Mar 2004 22:41:54 -0500 > To: > Subject: Re: Re: memory disorder > > Thanks for sharing your experiences about brain/memory function. > > It was good to hear others describe the memory/concentration problems > similar to mine. Especially not being able to understand conversation > if there is a distraction. If two people are talking to me at the same > time, it can be very difficult, almost painful to endure, and I can't > process either one. Drives me wild. I always thought it was that I had > sensitive hearing. Also, the multitasking think is tough. I can do a > lot of things well, but one at a time, please. I sometimes need a > second or two to find a word, but usually it is not worse than that. I > loved the comment about being able to remember that/what you could not > remember. So true. Names have always been a problem for me, ever since > I can remember (lol)....at least 50 years. With the exception of the > name thing, which is pretty constant, I find my mental function is > very unpredictable. Some hours/days I do great. Other times I know I > am low, and just try not to put myself in a position where I will be > taxed. But, I always know if I am clicking or not. I always remember > that I did not know what I should have. And frequently, later, I can > remember it again. (Except for names - always been really really hard > for me). I guess different parts of the brain are involved. I think > the QGel is helping this brain problem somewhat. Also, recently I > drink a cup of coffee when I am low on mental energy, and to my > surprise, that seems to make me sharper mentally sometimes. I use > coffee like a drug, never too much, only when I need it. I have had > these problems for many years, and while it is trying, I can still go > out an do my stuff most days. (Have to bluff and cover up sometimes, > but not to bad) The bad times seem a little worse now, but not that > much. I am optimistic that it may not get worse. > > One more thing. For me, restricting my carbs seems to help my mental > function. My mind gets really tired/cloudy after I eat bread, for > example. I have tried eating the low glycemic carbs, but I definitely > feel better when I dont eat many carbs at all. I KNOW it is not what > the mito docs recommend. I discovered this before I was diagnosed, and > do not understand how this fits into the mito theory. Maybe my > metabolic glitch is in the carb conversion chain. I dont know, but > more protein seems to agree with me. So much to learn, to try to > manage and optimize our condition. > > > It is good to hear from others who are experiencing similar things. > > Sunny > > > That is very interesting that you are experiencing similar things. I > can't say as that I feel like I am in a brain fog though. I don't seem > to have problems with the kind of forgetfulness tht lots of people > complain of. I am having problems following stories,for one thing. > Like during the test they told me a 3 or 4 sentence story and I was > suppose to repeat back the details of it, and I could barely tell any > of it. That is very typical of what I am experiencing. If I am in a > group of people and one is talking I can't seem to understand what they > are talking about if there is any distraction at all. I also got lost > going to my hairdresser' 2 months in a row, couldn't remember what > street to turn on. But yet the 2nd month I remembered that I had the > same problem the month before!??? That incident was what made my > doctor send me to the clinic to be tested. >> Scary. >> >> Smiles, >> >>> >>> >>> Date: 2004/03/22 Mon PM 03:33:38 EST >>> To: >>> Subject: Re: memory disorder >>> >>> I am going through a similar thing, . I had my first clear >>> day in months on Friday - big difference. One thing was that I had >>> my lactate, pyruvate, CK and ammonia checked, and my ammonia was >>> high. I understand that can cause brain fog. >>> >>> It is funny (I have a sick sense of humor) to be able to function >>> relatively well, but have very poor short-term memory. I went to a >>> neuro-psychologist and they found that there were deficits for me - >> I >>> have a high IQ too, but they could see that there were >>> inconsistencies in the results that showed memory loss and >>> impairment. Also had an absence seizure in front of the psych tech, >>> that was funny too. I can learn new things, do my work, but simple >>> things like remembering my kids' names or what I was doing are a >>> problem. >>> >>> I am waiting for Dr. P from the town MDA clinic or a nurse to >>> call back about the high ammonia, unfortunately I couldn't go to my >>> MDA clinic appointment last week because I forgot to get a >> referral. >>> A shame because my youngest son was supposed to go too... >>> >>> I sure wish I could figure out why I had that one good day >>> >>> Take care, >>> RH >>> >>> >>> >>>> >>>> >>>> My mom's deficits were scattered. Her biggest problem was with >> word >>> finding >>>> and it was made worse with fatigue, too much physical activity or >>> stress. I >>>> have the same word finding problems under these conditions. She >>> also had >>>> trouble with memory, especially new learning. She didn't have any >>> great >>>> increase once on the supplements until the past few months, >>> especially after >>>> some nutritional issues. >>>> >>>> Hugs, >>>> laurie >>>> >>>>> From: " Young " >>>>> Reply-To: >>>>> Date: Fri, 19 Mar 2004 17:55:54 -0500 >>>>> To: > >>>>> Subject: Re: memory disorder >>>>> >>>>> Hi Laurie, >>>>> >>>>> Did your mom complain of not being able to process thoughts and >>> not >>>>> remember? Only certain areas are effected they said, and it is >>> patchy, not >>>>> hemispherical or focal. Many of my testing areas still showed >>> higher than >>>>> average. >>>>> This is really concerning me. I wonder if they will end up >> doing >>> an MRI on >>>>> me? >>>>> >>>>> Smiles, >>>>> >>>>> >>>>> >>>>> memory disorder >>>>>>> >>>>>>> I have just been diagnosed after much official testing at a >>> memory >>>>> disorder >>>>>>> clinic to have mild to moderate cognitive deficits. It does >>> not fit the >>>>>>> Alzheimer or dementia profile at all at this time. But there >> is >>> most >>>>> certainly >>>>>>> something wrong. Not the usual age related forgetfulness. Does >>> anyone >>>>> else >>>>>>> have a " confirmed " memory disorder like this? I can not >> think. >>> learn >>>>> easily. >>>>>>> concentrate or multitask. My IQ is very high they said. so >> it >>> makes it >>>>> hard >>>>>>> to establish just how much I have lost. But this test will >>> give us a >>>>> base >>>>>>> line. I have to have more done in 8 months. Would appreciate >>> any >>>>> comments >>>>>>> from folks that have been officially diagnosed like this. >>>>>>> >>>>>>> Smiles, >>>>>>> >>>>>>> >>>>>> >>>>>> >>>>>> >>>>>> 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 23, 2004 Report Share Posted March 23, 2004 Have you had your ammonia levels tested? You might know if they were if they keep a cup of ice near where they take blood from you for the test tube. I was told the memory issues can be directly related to high (even high normal) ammonia, and that's what I think is going on with me. I only realized what a " brain fog " I was in when I had a clear day, so you may not feel " odd " unless something triggers you out of it. I am still waiting for a call back about treatment for it... Take care, RH > > > > > > > > > My mom's deficits were scattered. Her biggest problem was with word > > finding > > > and it was made worse with fatigue, too much physical activity or > > stress. I > > > have the same word finding problems under these conditions. She > > also had > > > trouble with memory, especially new learning. She didn't have any > > great > > > increase once on the supplements until the past few months, > > especially after > > > some nutritional issues. > > > > > > Hugs, > > > laurie > > > > > > > From: " Young " > > > > Reply-To: > > > > Date: Fri, 19 Mar 2004 17:55:54 -0500 > > > > To: > > > > > Subject: Re: memory disorder > > > > > > > > Hi Laurie, > > > > > > > > Did your mom complain of not being able to process thoughts and > > not > > > > remember? Only certain areas are effected they said, and it is > > patchy, not > > > > hemispherical or focal. Many of my testing areas still showed > > higher than > > > > average. > > > > This is really concerning me. I wonder if they will end up doing > > an MRI on > > > > me? > > > > > > > > Smiles, > > > > > > > > > > > > > > > > memory disorder > > > >>> > > > >>> I have just been diagnosed after much official testing at a > > memory > > > > disorder > > > >>> clinic to have mild to moderate cognitive deficits. It does > > not fit the > > > >>> Alzheimer or dementia profile at all at this time. But there is > > most > > > > certainly > > > >>> something wrong. Not the usual age related forgetfulness. Does > > anyone > > > > else > > > >>> have a " confirmed " memory disorder like this? I can not think. > > learn > > > > easily. > > > >>> concentrate or multitask. My IQ is very high they said. so it > > makes it > > > > hard > > > >>> to establish just how much I have lost. But this test will > > give us a > > > > base > > > >>> line. I have to have more done in 8 months. Would appreciate > > any > > > > comments > > > >>> from folks that have been officially diagnosed like this. > > > >>> > > > >>> Smiles, > > > >>> > > > >>> > > > >> > > > >> > > > >> > > > >> 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 23, 2004 Report Share Posted March 23, 2004 > One more thing. For me, restricting my carbs seems to help my > mental function. I have found that too, but I'm still nursing my youngest so I'm afraid to go on the Atkins diet while that is going on. > It is good to hear from others who are experiencing similar things. Yes (and no, too bad we have to go through this, and I'm sure others who haven't posted go through similar things). It is good to know one isn't alone... Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2004 Report Share Posted April 12, 2004 , Thanks for asking this question. I have been wondering about this, but keep forgetting to post about this. Now I see that my suspicions may be true. For the last year I worked, I began to make basic mistakes on jobs I had done successfully before. I thought it was stress, but even when on sick leave, when I would type or be talking or whatever, I couldn't remember things I had done or words I had said a million times. The inf. from this thread will be very helpful. God bless, Hazelpone memory disorder > > > >>> > > > >>> I have just been diagnosed after much official testing at a > > memory > > > > disorder > > > >>> clinic to have mild to moderate cognitive deficits. It does > > not fit the > > > >>> Alzheimer or dementia profile at all at this time. But there > is > > most > > > > certainly > > > >>> something wrong. Not the usual age related forgetfulness. Does > > anyone > > > > else > > > >>> have a " confirmed " memory disorder like this? I can not > think. > > learn > > > > easily. > > > >>> concentrate or multitask. My IQ is very high they said. so > it > > makes it > > > > hard > > > >>> to establish just how much I have lost. But this test will > > give us a > > > > base > > > >>> line. I have to have more done in 8 months. Would appreciate > > any > > > > comments > > > >>> from folks that have been officially diagnosed like this. > > > >>> > > > >>> Smiles, > > > >>> > > > >>> > > > >> > > > >> > > > >> > > > >> Medical advice, information, opinions, data and statements > > contained > > > > herein are not necessarily those of the list moderators. The > > author of this > > > > e mail is entirely responsible for its content. List members are > > reminded of > > > > their responsibility to evaluate the content of the postings and > > consult > > > > with their physicians regarding changes in their own treatment. > > > >> > > > >> Personal attacks are not permitted on the list and anyone who > > sends one is > > > > automatically moderated or removed depending on the severity of > > the attack. > > > >> > > > >> Quote Link to comment Share on other sites More sharing options...
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