Guest guest Posted April 23, 2002 Report Share Posted April 23, 2002 Pam, I know that no-one on the forum are doctors, but I am particularly imterested in trying to get your view on one of your statements below. 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. I am 46 years old (almost) still mobile and working full time. However, I have had problems with my gait for probably six years, most notably cannot tandem gait without overbalancing. I also get tremors, probably once a week in the hands and in the left shoulder when trying to lean on the left side in bed. I also appear to have ankle clonus. I also have episodic incontinence. My blood pressure is normal most of the time with occassional episodes where the lower reading (systolic) is unacceptably high. Anyway, my question is simply that given my age, would what is happening be aging or suggestive of something else afoot. I have been seeing a neurologist for six + years, but we are in the jury is out mode. Also, because I get the doctors and specialists sort of shrugging their shoulders all the time, I decided to get on with life and wait till I had something drastic happening that would convince them thst they should look further into my case. Sorry to prattle on. Best regards (from Downunder) --- Pam Bower pbower@...> wrote: > 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 > > > > > 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 23, 2002 Report Share Posted April 23, 2002 Pam, I know that no-one on the forum are doctors, but I am particularly imterested in trying to get your view on one of your statements below. 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. I am 46 years old (almost) still mobile and working full time. However, I have had problems with my gait for probably six years, most notably cannot tandem gait without overbalancing. I also get tremors, probably once a week in the hands and in the left shoulder when trying to lean on the left side in bed. I also appear to have ankle clonus. I also have episodic incontinence. My blood pressure is normal most of the time with occassional episodes where the lower reading (systolic) is unacceptably high. Anyway, my question is simply that given my age, would what is happening be aging or suggestive of something else afoot. I have been seeing a neurologist for six + years, but we are in the jury is out mode. Also, because I get the doctors and specialists sort of shrugging their shoulders all the time, I decided to get on with life and wait till I had something drastic happening that would convince them thst they should look further into my case. Sorry to prattle on. Best regards (from Downunder) --- Pam Bower pbower@...> wrote: > 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 > > > > > 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 I had a talk with my brother, who is a movement specialist, after I had read Pam's post, and he seems to agree. In the 6 years that he has been working at the balance center, he says he's seen lot's (well, he says hundreds, but that may be a figure of speech) of people who were getting older, hadn't done much exercise in their life and started developing problems with moving, balance and dizzyness. Basically he says 'if you don't use it, you lose it' counts for balance as well, especially when getting older. Of course, if you are worried, why not try and get an appointment with a movement specialist? Also, the other symptoms should be examined, I think. best wishes, Marcel > Pam, > > I know that no-one on the forum are doctors, but I am > particularly imterested in trying to get your view on > one of your statements below. > > 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. > > I am 46 years old (almost) still mobile and working > full time. However, I have had problems with my gait > for probably six years, most notably cannot tandem > gait without overbalancing. I also get tremors, > probably once a week in the hands and in the left > shoulder when trying to lean on the left side in bed. > I also appear to have ankle clonus. I also have > episodic incontinence. My blood pressure is normal > most of the time with occassional episodes where the > lower reading (systolic) is unacceptably high. > > Anyway, my question is simply that given my age, would > what is happening be aging or suggestive of something > else afoot. > > I have been seeing a neurologist for six + years, but > we are in the jury is out mode. Also, because I get > the doctors and specialists sort of shrugging their > shoulders all the time, I decided to get on with life > and wait till I had something drastic happening that > would convince them thst they should look further into > my case. > > Sorry to prattle on. > > Best regards > (from Downunder) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 This is so true. I tried alot of neurologist until I found one who knew about movement disorders. The other ones couldn't figure out what was wrong with me so they chalked me up to be psycho. Thank God I found the right neurologist! God bless, Belinda > 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 30, 2002 Report Share Posted April 30, 2002 This is so true. I tried alot of neurologist until I found one who knew about movement disorders. The other ones couldn't figure out what was wrong with me so they chalked me up to be psycho. Thank God I found the right neurologist! God bless, Belinda > 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...
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