Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Marcel, Welcome to our family, sorry you had to find us. I can understand your cause for concern. Most of us have been down this path. Your dad my have something other than MSA, such as pure autonomic failure or Lewy Body Disease, but I would certainly want some follow up in six months (sooner if symptoms get worse). The " drunken man's walk " could be caused by low BP OR it could be a problem of the cerebellum, but either way it needs to be addressed. Did he go to a movement disorder specialist? They should be able to determine if it is a low BP problem or a cerebellar problem. Tremor could be caused by low potassium, but hopefully they did a blood test to determine this. If he has a primary care physician, I would consult them as to what to do next and to talk about these findings. SPECT and PET tests are NOT perfect for MSA My wife's MRI's were inconclusive at best, but she had all the symptoms of MSA. Don't worry, we are used to hearing from people who do not know want to do next. Doctor's themselves are still trying to decide exactly what MSA is. Take care, Bill Werre in Herndon, Virginia, USA ================== las_zenow wrote: > 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 19, 2002 Report Share Posted April 19, 2002 Marcel, I didn't pick up on what type of doctor your father is seeing. Is he seeing a neurologist? There's always the option of a second opinion consult. We insisted on one when we became impatient with my brother's neurologist, and the second opinion neuro gave a diagnosis of probable MSA the day of his consult. Jerry Cash 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 19, 2002 Report Share Posted April 19, 2002 Marcel, I didn't pick up on what type of doctor your father is seeing. Is he seeing a neurologist? There's always the option of a second opinion consult. We insisted on one when we became impatient with my brother's neurologist, and the second opinion neuro gave a diagnosis of probable MSA the day of his consult. Jerry Cash 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 19, 2002 Report Share Posted April 19, 2002 Hi Marcel, No need to apologize for diving right in with your questions, that's what we're here for. First of all, I'm wondering where your father is from and what specialist he saw. It's not my place to second guess what his doctor told your sister, if you are worried you could try to find him a second opinion... we may be able to suggest someone if you tell us where you are. What I can tell you is that there is no cure for MSA but there is treatment for the symptom of orthostatic hypotension or " OH " (low blood pressure when standing). You said he was going back to see a cardiologist for this symptom so all I can say is .. so far so good.. if this is his most troubling complaint at the moment he is in good hands. As for what you read about diagnostic criteria for MSA you are correct. Loss of balance or " ataxia " (the drunken man's walk), incontinence and tremor are also symptoms of MSA.. they are also symptoms of other neurological disorders or even just the result of normal aging depending on the severity of the symptoms. Right now the only definite way to know if someone has MSA is with an autopsy so while a patient is living doctors can only say Possible MSA or Probable MSA. If you've read this website you would have seen those terms mentioned http://www.emedicine.com/neuro/topic671.htm I would make sure his doctors had a copy of this article. MSA is extremely difficult to diagnose and doctors do tend to wait until they've followed a patient for several years before they feel confident enough to give them that label. It is possible your father could develop more symptoms consistent with MSA, it is also possible that his OH will be his only major symptom. It's a matter of waiting and watching. You and your sister are now informed about possible symptoms to watch out for, when new symptoms arise then you can encourage your father to have them looked after. Again there is no cure for MSA but most of the symptoms can be managed. If he develops problems with slurred speech and difficulty swallowing then make sure he is referred to a speech therapist. If his balance gets worse make sure he starts to use a walker or a wheelchair to prevent falls and encourage him to exercise. If he develops sleep apnea make sure he goes to see a sleep specialist to be treated for that. Watch out for any sudden decline in his health as that can indicate an infection. Urinary tract infections are very common in people who experience incontinence. I hope this helps a bit. Take care, Pam Nova Scotia, Canada 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hi Marcel, No need to apologize for diving right in with your questions, that's what we're here for. First of all, I'm wondering where your father is from and what specialist he saw. It's not my place to second guess what his doctor told your sister, if you are worried you could try to find him a second opinion... we may be able to suggest someone if you tell us where you are. What I can tell you is that there is no cure for MSA but there is treatment for the symptom of orthostatic hypotension or " OH " (low blood pressure when standing). You said he was going back to see a cardiologist for this symptom so all I can say is .. so far so good.. if this is his most troubling complaint at the moment he is in good hands. As for what you read about diagnostic criteria for MSA you are correct. Loss of balance or " ataxia " (the drunken man's walk), incontinence and tremor are also symptoms of MSA.. they are also symptoms of other neurological disorders or even just the result of normal aging depending on the severity of the symptoms. Right now the only definite way to know if someone has MSA is with an autopsy so while a patient is living doctors can only say Possible MSA or Probable MSA. If you've read this website you would have seen those terms mentioned http://www.emedicine.com/neuro/topic671.htm I would make sure his doctors had a copy of this article. MSA is extremely difficult to diagnose and doctors do tend to wait until they've followed a patient for several years before they feel confident enough to give them that label. It is possible your father could develop more symptoms consistent with MSA, it is also possible that his OH will be his only major symptom. It's a matter of waiting and watching. You and your sister are now informed about possible symptoms to watch out for, when new symptoms arise then you can encourage your father to have them looked after. Again there is no cure for MSA but most of the symptoms can be managed. If he develops problems with slurred speech and difficulty swallowing then make sure he is referred to a speech therapist. If his balance gets worse make sure he starts to use a walker or a wheelchair to prevent falls and encourage him to exercise. If he develops sleep apnea make sure he goes to see a sleep specialist to be treated for that. Watch out for any sudden decline in his health as that can indicate an infection. Urinary tract infections are very common in people who experience incontinence. I hope this helps a bit. Take care, Pam Nova Scotia, Canada 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hi Jerry, Yes, he was seeing a neurologist. I offered the suggestion of a second opinion, but I don't think my father will warm to the idea. He feels a bit reassured now and must be thinking along the lines of 'even if it does turn out to be MSA later, if it is too early too tell now, it's too early to get too worried.' Well, he probably does worry, but the word 'denial' comes to mind, he's mainly concerned with getting his bloodpressure back up. It is hard for me to say, I live 300 km away & have to go on what my sister tells me. I think the most I can do now is visit more often and keep a closer eye on him. Marcel > Marcel, > > I didn't pick up on what type of doctor your father is seeing. > Is he seeing a neurologist? There's always the option > of a second opinion consult. We insisted on one when we became > impatient with my brother's neurologist, and the second opinion > neuro gave a diagnosis of probable MSA the day of his consult. > > Jerry Cash > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Hi Jerry, Yes, he was seeing a neurologist. I offered the suggestion of a second opinion, but I don't think my father will warm to the idea. He feels a bit reassured now and must be thinking along the lines of 'even if it does turn out to be MSA later, if it is too early too tell now, it's too early to get too worried.' Well, he probably does worry, but the word 'denial' comes to mind, he's mainly concerned with getting his bloodpressure back up. It is hard for me to say, I live 300 km away & have to go on what my sister tells me. I think the most I can do now is visit more often and keep a closer eye on him. Marcel > Marcel, > > I didn't pick up on what type of doctor your father is seeing. > Is he seeing a neurologist? There's always the option > of a second opinion consult. We insisted on one when we became > impatient with my brother's neurologist, and the second opinion > neuro gave a diagnosis of probable MSA the day of his consult. > > Jerry Cash > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Welcome, like the others, always sorry you are here because it means someone you love has been touched with one of these awful diseases. Feel free to dive, I did because I had no other choice, my family looks to me for guidance on things medical, I feel its a role reversal. My dad has MSA or something, and feel I'm trying to beat the clock to get him help. This group is knowledgable and I appreciate the honest exchange of information. Hang in there. Cindy B. in Philly. 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 19, 2002 Report Share Posted April 19, 2002 If they were testing for possible MSA, Shy Drager, etc., what type of test would they do? Is a EEG, MRI, better or is a PET, what is the difference? Thanks! Shirley cg to Ralph "I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly" Letter By Kristy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.