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 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 Marcel, Welcome to the group. I am sorry for the reason you are here. To me your father sounds like he has MSA but I am not a doctor. I know that I had to go through a lot of neurologist before I found someone who didn't say it was all in my head. I also had to visit that one for some time before being diagnosed by my symptoms and the elimination of tests that I took. One thing I know for sure there are more than one doctor out there. If you find one you like though stay with him. This is not an exact science with rare diseases. There is some great help here. God bless you and your family, Belinda > 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 Marcel, Welcome to the group. I am sorry for the reason you are here. To me your father sounds like he has MSA but I am not a doctor. I know that I had to go through a lot of neurologist before I found someone who didn't say it was all in my head. I also had to visit that one for some time before being diagnosed by my symptoms and the elimination of tests that I took. One thing I know for sure there are more than one doctor out there. If you find one you like though stay with him. This is not an exact science with rare diseases. There is some great help here. God bless you and your family, Belinda > 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 ---Marcel, I may not be answering your message in the right spot. I hope it is OK. PET and SPECT use various Radio Active sources. For example one place in Connecticut is using DOPASCAN and reports good results Dx PD or MSA, etc. With PET some use FDG ie Long Island Jewish, North Shore while NIH with Dr. Goldstein has been using F dopamine. Others use F Dopa with PET. With MRI you can use various contrast agents and modulations. One that has been gaining some recognition but is not available at all sites is called Diffusion Weighted Imaging (MRI). One thing you might consider is getting all the scan information,including reports and films and sending the data to another site for a second opinion on the films. I hope this is of help. Let me know if I can be of help. Go Luck. AL ASLB@... In shydrager@y..., " Beck " wrote: > 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@y... > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2002 Report Share Posted April 20, 2002 Hi Bill, Pam, Aletta, Cindy, Al, Shirley & all others, First, thanks for your kind words, they felt like a warm embrace. I know I will be lurking more than posting in this group, but I hope I can contribute something as well. We live in The Netherlands, my mom, dad & sister in Maastricht, me in Rotterdam. I also have a brother in Almere and one in the USA. I totally agree about making sure my dad gets a check-up in 6 months. I'm not sure if he's seen a movement disorder specialist, I think it's a good idea to start keeping track of what tests he has and hasn't had and what the results are. And no matter how stubborn my dad is (Yes, on the one hand he does have an attitude of 'I'm not sick,' but on the other he likes the attention & don't know if and when he's exaggerating), I am sure he will get to do to balance tests no matter what: my (US-based) brother is a PT and part of his work is for a Balance center.. next time my dad visits, he's bound to turn into a guinea-pig, like it or not. My brother reminded me that my dad's life-long lack of exercise, his meds & his heart condition could also be a cause of his reduced blood pressure and dizziness. The main thing we can do is keep a closer eye on him, and together I feel we can manage. It does feel a bit awkward, as my dad & me are not close & I usually only see him once every two or three months. My earlier confusion was partially about that: how concerned I could get over someone I thought I hardly had any connection too. The Mind works in mysterious ways... Thanks to the list of websites this group offers, I feel a lot more informed in a short period of time, and it does help ease a little of the anxiety to know what we have to watch out for. Still, not living anywhere near him makes it difficult to 'notice' the small things, but in two weeks there's the appointment with the cardiologist, so we'll see then what happens next. Wishing strength to you all, Marcel 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.