Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Yikes ............ are there people out there 46 years old ............ what was I doing when I was 46 :>) Now to put my 2 cents worth in here. Your problems, in my opinion, are not age related. Sure, we all have things that don't work right once in awhile at that age but believe me, 46 normally does not start giving you that kind of trouble much less age 40 if you have been having some of those problems for 6 years already. So, my long winded answer would be that something is going on. Now what that something is may be another story. I say this because it has taken 40 years to get a diagnosis for my mother's symptoms because they were so sporadic and you had to take all things into consideration when trying to determine what was going on. In the mean time she has lived one heck of a good life in those 40 years (she has driven me nearly insane along with my brothers but we managed to ride it out) and now at almost 81 this feisty 120 pound woman has been identified as having Pick's Disease also known to some as FTD or frontal temporal lobe dementia. Because we worked so hard to keep her independent and living her own life she just kept going on and living her life. For some reason the disease moved very slowly for her or maybe because she is just one of the most stubborn, bullheaded, independent women on the face of this earth, she was going to live her life the way she wanted to live it. She is now confined in a locked and secure unit as of the first of the year but is still doing things her way. The nurses just shake their heads in amazement at what she can still do. So hang in there , if you're lucky, it will take your doctors 40 years to put a name to whatever you have. I wish you well. Sally in KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Thanks Sally, I will keep your advice in mind. I have painted two bedrooms over the last four days and start the third one tomorrow. So I don't intend taking anything lying down. Regards --- Sally Lesline slesline@...> wrote: > > Yikes ............ are there people out there 46 > years old ............ > what was I doing when I was 46 :>) Now to put my 2 > cents worth in here. > Your problems, in my opinion, are not age related. > Sure, we all have > things that don't work right once in awhile at that > age but believe me, > 46 normally does not start giving you that kind of > trouble much less age > 40 if you have been having some of those problems > for 6 years already. > > So, my long winded answer would be that something is > going on. Now what > that something is may be another story. I say this > because it has taken > 40 years to get a diagnosis for my mother's symptoms > because they were > so sporadic and you had to take all things into > consideration when > trying to determine what was going on. In the mean > time she has lived > one heck of a good life in those 40 years (she has > driven me nearly > insane along with my brothers but we managed to ride > it out) and now at > almost 81 this feisty 120 pound woman has been > identified as having > Pick's Disease also known to some as FTD or frontal > temporal lobe > dementia. > > Because we worked so hard to keep her independent > and living her own > life she just kept going on and living her life. > For some reason the > disease moved very slowly for her or maybe because > she is just one of > the most stubborn, bullheaded, independent women on > the face of this > earth, she was going to live her life the way she > wanted to live it. > She is now confined in a locked and secure unit as > of the first of the > year but is still doing things her way. The nurses > just shake their > heads in amazement at what she can still do. > > So hang in there , if you're lucky, it will > take your doctors 40 > years to put a name to whatever you have. I wish > you well. > > Sally in KS > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Thanks Sally, I will keep your advice in mind. I have painted two bedrooms over the last four days and start the third one tomorrow. So I don't intend taking anything lying down. Regards --- Sally Lesline slesline@...> wrote: > > Yikes ............ are there people out there 46 > years old ............ > what was I doing when I was 46 :>) Now to put my 2 > cents worth in here. > Your problems, in my opinion, are not age related. > Sure, we all have > things that don't work right once in awhile at that > age but believe me, > 46 normally does not start giving you that kind of > trouble much less age > 40 if you have been having some of those problems > for 6 years already. > > So, my long winded answer would be that something is > going on. Now what > that something is may be another story. I say this > because it has taken > 40 years to get a diagnosis for my mother's symptoms > because they were > so sporadic and you had to take all things into > consideration when > trying to determine what was going on. In the mean > time she has lived > one heck of a good life in those 40 years (she has > driven me nearly > insane along with my brothers but we managed to ride > it out) and now at > almost 81 this feisty 120 pound woman has been > identified as having > Pick's Disease also known to some as FTD or frontal > temporal lobe > dementia. > > Because we worked so hard to keep her independent > and living her own > life she just kept going on and living her life. > For some reason the > disease moved very slowly for her or maybe because > she is just one of > the most stubborn, bullheaded, independent women on > the face of this > earth, she was going to live her life the way she > wanted to live it. > She is now confined in a locked and secure unit as > of the first of the > year but is still doing things her way. The nurses > just shake their > heads in amazement at what she can still do. > > So hang in there , if you're lucky, it will > take your doctors 40 > years to put a name to whatever you have. I wish > you well. > > Sally in KS > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Mike, if I may respond, you might want to consider keeping a log of your symptoms that are unusual. My dad began with minor symptoms we attributed to aging, and like you, we just lived life until it became an issue to deal with. (He began falling on a regular basis). My mom still tracks the falling episodes for his doctor visits as it shows a pattern. We look back several years and try to piece together when this all began. Just a thought. Cindy B.. a bit confused > > > > > > > Hi all. My name is Marcel Abraas & I'm new to this > > list. I have read > > > the messages here for a couple of days now & I am > > touched by what I > > > read. I hope you forgive me for diving right in > > and posting a > > > question, but I am a bit confused about things and > > could use some > > > advise from the experts (that's you). > > > Last Tuesday I heard doctors were considering the > > possibility that my > > > Dad may have Shy-Dräger's, or MSA, and that he had > > to visit the > > > hospital today for a talk. As my dad is not used > > to asking questions > > > & informing himself as well as he should, my > > sister went along. The > > > result of a 45 minute talk was that they said as > > far as they can see > > > now, it's not MSA. > > > Their reasoning, however, was that MSA is > > dysfunction of Multiple > > > Systems, whereas with he has 'only' autonomic > > failure, being extreme > > > low blood pressure (60/40 but higher when he is > > lying down). When I > > > talked to my sister afterwards, she disagreed with > > that, as we know > > > he also has occasional urinary incontinence, a > > tremor in his hands > > > (but only when he gets emotional, he said) and the > > " drunken man's > > > walk " . > > > > > > Having read about the MSA Diagnostic Criteria I > > would think there is > > > reason to worry. The doctors, however, feel no > > further neurological > > > tests are necessary, nor does he need to go back > > in 6 months or a > > > year. He is being referred back to his > > cardiologistto take care of > > > the low blood pressure. He had 2 MRI scans, one of > > which was good, > > > the other was less than good (but not 'bad'), and > > his PET and SPECT > > > tests were ook (I hope I have all the names & > > results right, I only > > > heard it once so far). > > > > > > So what does this mean? If I got my info right > > about PET and SPECT, > > > it can't be MSA, or even can't become MSA? And if > > not, why aren't > > > there more tests to determine what it *is*? > > > My dad thinks his 'funny walk' was caused by the > > medicines he got. > > > Since he's been taken off of those now, I'll > > probably know soon > > > enough, but having spent some long days worrying > > over possibly > > > knowing what was wrong with him, I'm reluctant to > > go back to an > > > attitude of 'they don't know, but let's not > > worry'. > > > > > > I hope I'm no being intrusive with just dumping > > this here, and I'd > > > really like to hear what you have to say. > > > > > > Thank you, > > > > > > Marcel Abraas > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Mike, if I may respond, you might want to consider keeping a log of your symptoms that are unusual. My dad began with minor symptoms we attributed to aging, and like you, we just lived life until it became an issue to deal with. (He began falling on a regular basis). My mom still tracks the falling episodes for his doctor visits as it shows a pattern. We look back several years and try to piece together when this all began. Just a thought. Cindy B.. a bit confused > > > > > > > Hi all. My name is Marcel Abraas & I'm new to this > > list. I have read > > > the messages here for a couple of days now & I am > > touched by what I > > > read. I hope you forgive me for diving right in > > and posting a > > > question, but I am a bit confused about things and > > could use some > > > advise from the experts (that's you). > > > Last Tuesday I heard doctors were considering the > > possibility that my > > > Dad may have Shy-Dräger's, or MSA, and that he had > > to visit the > > > hospital today for a talk. As my dad is not used > > to asking questions > > > & informing himself as well as he should, my > > sister went along. The > > > result of a 45 minute talk was that they said as > > far as they can see > > > now, it's not MSA. > > > Their reasoning, however, was that MSA is > > dysfunction of Multiple > > > Systems, whereas with he has 'only' autonomic > > failure, being extreme > > > low blood pressure (60/40 but higher when he is > > lying down). When I > > > talked to my sister afterwards, she disagreed with > > that, as we know > > > he also has occasional urinary incontinence, a > > tremor in his hands > > > (but only when he gets emotional, he said) and the > > " drunken man's > > > walk " . > > > > > > Having read about the MSA Diagnostic Criteria I > > would think there is > > > reason to worry. The doctors, however, feel no > > further neurological > > > tests are necessary, nor does he need to go back > > in 6 months or a > > > year. He is being referred back to his > > cardiologistto take care of > > > the low blood pressure. He had 2 MRI scans, one of > > which was good, > > > the other was less than good (but not 'bad'), and > > his PET and SPECT > > > tests were ook (I hope I have all the names & > > results right, I only > > > heard it once so far). > > > > > > So what does this mean? If I got my info right > > about PET and SPECT, > > > it can't be MSA, or even can't become MSA? And if > > not, why aren't > > > there more tests to determine what it *is*? > > > My dad thinks his 'funny walk' was caused by the > > medicines he got. > > > Since he's been taken off of those now, I'll > > probably know soon > > > enough, but having spent some long days worrying > > over possibly > > > knowing what was wrong with him, I'm reluctant to > > go back to an > > > attitude of 'they don't know, but let's not > > worry'. > > > > > > I hope I'm no being intrusive with just dumping > > this here, and I'd > > > really like to hear what you have to say. > > > > > > Thank you, > > > > > > Marcel Abraas > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2002 Report Share Posted April 24, 2002 Hi Mike, if I may respond, you might want to consider keeping a log of your symptoms that are unusual. My dad began with minor symptoms we attributed to aging, and like you, we just lived life until it became an issue to deal with. (He began falling on a regular basis). My mom still tracks the falling episodes for his doctor visits as it shows a pattern. We look back several years and try to piece together when this all began. Just a thought. Cindy B.. a bit confused > > > > > > > Hi all. My name is Marcel Abraas & I'm new to this > > list. I have read > > > the messages here for a couple of days now & I am > > touched by what I > > > read. I hope you forgive me for diving right in > > and posting a > > > question, but I am a bit confused about things and > > could use some > > > advise from the experts (that's you). > > > Last Tuesday I heard doctors were considering the > > possibility that my > > > Dad may have Shy-Dräger's, or MSA, and that he had > > to visit the > > > hospital today for a talk. As my dad is not used > > to asking questions > > > & informing himself as well as he should, my > > sister went along. The > > > result of a 45 minute talk was that they said as > > far as they can see > > > now, it's not MSA. > > > Their reasoning, however, was that MSA is > > dysfunction of Multiple > > > Systems, whereas with he has 'only' autonomic > > failure, being extreme > > > low blood pressure (60/40 but higher when he is > > lying down). When I > > > talked to my sister afterwards, she disagreed with > > that, as we know > > > he also has occasional urinary incontinence, a > > tremor in his hands > > > (but only when he gets emotional, he said) and the > > " drunken man's > > > walk " . > > > > > > Having read about the MSA Diagnostic Criteria I > > would think there is > > > reason to worry. The doctors, however, feel no > > further neurological > > > tests are necessary, nor does he need to go back > > in 6 months or a > > > year. He is being referred back to his > > cardiologistto take care of > > > the low blood pressure. He had 2 MRI scans, one of > > which was good, > > > the other was less than good (but not 'bad'), and > > his PET and SPECT > > > tests were ook (I hope I have all the names & > > results right, I only > > > heard it once so far). > > > > > > So what does this mean? If I got my info right > > about PET and SPECT, > > > it can't be MSA, or even can't become MSA? And if > > not, why aren't > > > there more tests to determine what it *is*? > > > My dad thinks his 'funny walk' was caused by the > > medicines he got. > > > Since he's been taken off of those now, I'll > > probably know soon > > > enough, but having spent some long days worrying > > over possibly > > > knowing what was wrong with him, I'm reluctant to > > go back to an > > > attitude of 'they don't know, but let's not > > worry'. > > > > > > I hope I'm no being intrusive with just dumping > > this here, and I'd > > > really like to hear what you have to say. > > > > > > Thank you, > > > > > > Marcel Abraas > > > > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 I must tell you this is how my husband started and there were not any doctors around here that could help. They tried everything. Then he was referred to Hopkins and was diagnosed the very first day. The everyday specialist doesn't know enough about rare diseases to recognize them. Not to put them down, but they deal with the more common problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2002 Report Share Posted April 29, 2002 OWECPE6, Are you living in the Baltimore area? We have a support group that meets in the Potomac, MD area. We have some people who would like to meet in the Baltimore/polis area. Take care, Bill Werre --------------------------------------- OWECPE6@... wrote: I must tell you this is how my husband started and there were not any doctors around here that could help. They tried everything. Then he was referred to Hopkins and was diagnosed the very first day. The everyday specialist doesn't know enough about rare diseases to recognize them. Not to put them down, but they deal with the more common problems. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
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