Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 I'm coming into this late, and must have missed the first email on subject-What caught my eye was Jankovic-that is the doc in Houston that we were given for my parents to ' " phone consult " with dad's neuro in Pgh. before deciding to go there for a 2nd opinion. This is disheartening-was there anything productive about this meeting?? Seems not. Sent 3/15. Cindy B. Re: Jeff Maciejewski > > , > Wondering how Jeff made out with his doctor's visit?. > Jean & Chrissie > > 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 February 22, 2002 Report Share Posted February 22, 2002 I'm coming into this late, and must have missed the first email on subject-What caught my eye was Jankovic-that is the doc in Houston that we were given for my parents to ' " phone consult " with dad's neuro in Pgh. before deciding to go there for a 2nd opinion. This is disheartening-was there anything productive about this meeting?? Seems not. Sent 3/15. Cindy B. Re: Jeff Maciejewski > > , > Wondering how Jeff made out with his doctor's visit?. > Jean & Chrissie > > 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 February 22, 2002 Report Share Posted February 22, 2002 I'm coming into this late, and must have missed the first email on subject-What caught my eye was Jankovic-that is the doc in Houston that we were given for my parents to ' " phone consult " with dad's neuro in Pgh. before deciding to go there for a 2nd opinion. This is disheartening-was there anything productive about this meeting?? Seems not. Sent 3/15. Cindy B. Re: Jeff Maciejewski > > , > Wondering how Jeff made out with his doctor's visit?. > Jean & Chrissie > > 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 February 22, 2002 Report Share Posted February 22, 2002 sent 3/15-reading back emails-my husband pops the SD into its own folder! This answers my previous questions about Dr. J. as my mom and I were thinking about going to TX. Will take Bill Werre's suggestion and check out Cleveland Clinic FIRST. This is a valuable exchange of info, as you may prevent someone else from same. Jeff Maciejewski > Hi Everyone, > > Well, we're back. I haven't posted in a while, as we dropped out of the > group in December. The last communication I sent you all was that we were > going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA. > I had heard some of the horror stories of Dr. J's " bedside manner " , and > they were pretty much true to form. We were there for about 3 hours. I > must say the workup and history was very thorough, though it was done by a > neuro intern. Dr. Jankovic only came in for the consultation, which lasted > about 30 minutes. He felt that Jeff did not have MSA, as he was not > exhibiting some of the " classic " symptoms, namely the OH and sexual > dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He did confim neurological > dysfunction, as Jeff at that time was having intermitent problems with > balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad (personality wise), > just pretty matter of fact, and pretty sure it was not MSA. > > Well, over the past three months, all of the " mild " symptoms Jeff had have > become severe, and on a few occasions, life threatening. His blood > pressure is all over the place. Lying down it's 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an example). He's passed out > half a dozen times now because he's stood up suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the morning. He's almost > wrecked the car a few times on his way to work because he can't keep his > eyes open, and he gets extremely disoriented. His swallowing problems are > alarming. He almost NEVER can swallow liquids properly. The other day he > said that he went over an hour without being able to swallow. He finally > got somewhere and put something solid in his mouth to swallow. He had his > first MAJOR bowel impaction. That one almost put him in the hospital. He > has both urinary and sexual dysfunction. He has terrible swelling in the > hands and feet, and his joints hurt terribly. His speech is also slurred > and very hard to understand. Yesterday morning his speech was almost > incomprehensible, sounded like someone who's had a stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he walks like an old man. He > feels totally demoralized, and we are both scared. Jeff feels as though > he's dying. Last Wednesday we went to our internist, who's been there > through all of this, and initially said he might have MSA. Jeff told him > how he felt, that he felt like he was dying, and for the first time the > doctor looked at both of us and said " Jeff, I believe you are dying also " . > We were to have a follow up appointment with Dr. Jankovic on April 19th. > But when our internist saw Jeff last week, he got on the phone and they > moved the appointment up to tomorrow. So, Jeff is on his way to Houston as > I write. I can't go because of the kids, so one of his best friends is > going down with him. I'm afraid for him to drive alone all that way (6 > hours). > > Please keep us in your prayers. And, though the circumstances are > terrible, I'm glad to be back with the group. I feel like we need this > support now more than ever. And I appreciate every one in the group who > contributes. Thanks again... M. > > > 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 February 22, 2002 Report Share Posted February 22, 2002 sent 3/15-reading back emails-my husband pops the SD into its own folder! This answers my previous questions about Dr. J. as my mom and I were thinking about going to TX. Will take Bill Werre's suggestion and check out Cleveland Clinic FIRST. This is a valuable exchange of info, as you may prevent someone else from same. Jeff Maciejewski > Hi Everyone, > > Well, we're back. I haven't posted in a while, as we dropped out of the > group in December. The last communication I sent you all was that we were > going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA. > I had heard some of the horror stories of Dr. J's " bedside manner " , and > they were pretty much true to form. We were there for about 3 hours. I > must say the workup and history was very thorough, though it was done by a > neuro intern. Dr. Jankovic only came in for the consultation, which lasted > about 30 minutes. He felt that Jeff did not have MSA, as he was not > exhibiting some of the " classic " symptoms, namely the OH and sexual > dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He did confim neurological > dysfunction, as Jeff at that time was having intermitent problems with > balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad (personality wise), > just pretty matter of fact, and pretty sure it was not MSA. > > Well, over the past three months, all of the " mild " symptoms Jeff had have > become severe, and on a few occasions, life threatening. His blood > pressure is all over the place. Lying down it's 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an example). He's passed out > half a dozen times now because he's stood up suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the morning. He's almost > wrecked the car a few times on his way to work because he can't keep his > eyes open, and he gets extremely disoriented. His swallowing problems are > alarming. He almost NEVER can swallow liquids properly. The other day he > said that he went over an hour without being able to swallow. He finally > got somewhere and put something solid in his mouth to swallow. He had his > first MAJOR bowel impaction. That one almost put him in the hospital. He > has both urinary and sexual dysfunction. He has terrible swelling in the > hands and feet, and his joints hurt terribly. His speech is also slurred > and very hard to understand. Yesterday morning his speech was almost > incomprehensible, sounded like someone who's had a stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he walks like an old man. He > feels totally demoralized, and we are both scared. Jeff feels as though > he's dying. Last Wednesday we went to our internist, who's been there > through all of this, and initially said he might have MSA. Jeff told him > how he felt, that he felt like he was dying, and for the first time the > doctor looked at both of us and said " Jeff, I believe you are dying also " . > We were to have a follow up appointment with Dr. Jankovic on April 19th. > But when our internist saw Jeff last week, he got on the phone and they > moved the appointment up to tomorrow. So, Jeff is on his way to Houston as > I write. I can't go because of the kids, so one of his best friends is > going down with him. I'm afraid for him to drive alone all that way (6 > hours). > > Please keep us in your prayers. And, though the circumstances are > terrible, I'm glad to be back with the group. I feel like we need this > support now more than ever. And I appreciate every one in the group who > contributes. Thanks again... M. > > > 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 February 22, 2002 Report Share Posted February 22, 2002 sent 3/15-reading back emails-my husband pops the SD into its own folder! This answers my previous questions about Dr. J. as my mom and I were thinking about going to TX. Will take Bill Werre's suggestion and check out Cleveland Clinic FIRST. This is a valuable exchange of info, as you may prevent someone else from same. Jeff Maciejewski > Hi Everyone, > > Well, we're back. I haven't posted in a while, as we dropped out of the > group in December. The last communication I sent you all was that we were > going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA. > I had heard some of the horror stories of Dr. J's " bedside manner " , and > they were pretty much true to form. We were there for about 3 hours. I > must say the workup and history was very thorough, though it was done by a > neuro intern. Dr. Jankovic only came in for the consultation, which lasted > about 30 minutes. He felt that Jeff did not have MSA, as he was not > exhibiting some of the " classic " symptoms, namely the OH and sexual > dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He did confim neurological > dysfunction, as Jeff at that time was having intermitent problems with > balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad (personality wise), > just pretty matter of fact, and pretty sure it was not MSA. > > Well, over the past three months, all of the " mild " symptoms Jeff had have > become severe, and on a few occasions, life threatening. His blood > pressure is all over the place. Lying down it's 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an example). He's passed out > half a dozen times now because he's stood up suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the morning. He's almost > wrecked the car a few times on his way to work because he can't keep his > eyes open, and he gets extremely disoriented. His swallowing problems are > alarming. He almost NEVER can swallow liquids properly. The other day he > said that he went over an hour without being able to swallow. He finally > got somewhere and put something solid in his mouth to swallow. He had his > first MAJOR bowel impaction. That one almost put him in the hospital. He > has both urinary and sexual dysfunction. He has terrible swelling in the > hands and feet, and his joints hurt terribly. His speech is also slurred > and very hard to understand. Yesterday morning his speech was almost > incomprehensible, sounded like someone who's had a stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he walks like an old man. He > feels totally demoralized, and we are both scared. Jeff feels as though > he's dying. Last Wednesday we went to our internist, who's been there > through all of this, and initially said he might have MSA. Jeff told him > how he felt, that he felt like he was dying, and for the first time the > doctor looked at both of us and said " Jeff, I believe you are dying also " . > We were to have a follow up appointment with Dr. Jankovic on April 19th. > But when our internist saw Jeff last week, he got on the phone and they > moved the appointment up to tomorrow. So, Jeff is on his way to Houston as > I write. I can't go because of the kids, so one of his best friends is > going down with him. I'm afraid for him to drive alone all that way (6 > hours). > > Please keep us in your prayers. And, though the circumstances are > terrible, I'm glad to be back with the group. I feel like we need this > support now more than ever. And I appreciate every one in the group who > contributes. Thanks again... M. > > > 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 February 22, 2002 Report Share Posted February 22, 2002 -my dad has all the symptoms you describe, will keep reading to catch up on your situation. My prayers are with you. Cindy B. Jeff Maciejewski > Hi Everyone, > > Well, we're back. I haven't posted in a while, as we dropped out of the > group in December. The last communication I sent you all was that we were > going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA. > I had heard some of the horror stories of Dr. J's " bedside manner " , and > they were pretty much true to form. We were there for about 3 hours. I > must say the workup and history was very thorough, though it was done by a > neuro intern. Dr. Jankovic only came in for the consultation, which lasted > about 30 minutes. He felt that Jeff did not have MSA, as he was not > exhibiting some of the " classic " symptoms, namely the OH and sexual > dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He did confim neurological > dysfunction, as Jeff at that time was having intermitent problems with > balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad (personality wise), > just pretty matter of fact, and pretty sure it was not MSA. > > Well, over the past three months, all of the " mild " symptoms Jeff had have > become severe, and on a few occasions, life threatening. His blood > pressure is all over the place. Lying down it's 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an example). He's passed out > half a dozen times now because he's stood up suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the morning. He's almost > wrecked the car a few times on his way to work because he can't keep his > eyes open, and he gets extremely disoriented. His swallowing problems are > alarming. He almost NEVER can swallow liquids properly. The other day he > said that he went over an hour without being able to swallow. He finally > got somewhere and put something solid in his mouth to swallow. He had his > first MAJOR bowel impaction. That one almost put him in the hospital. He > has both urinary and sexual dysfunction. He has terrible swelling in the > hands and feet, and his joints hurt terribly. His speech is also slurred > and very hard to understand. Yesterday morning his speech was almost > incomprehensible, sounded like someone who's had a stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he walks like an old man. He > feels totally demoralized, and we are both scared. Jeff feels as though > he's dying. Last Wednesday we went to our internist, who's been there > through all of this, and initially said he might have MSA. Jeff told him > how he felt, that he felt like he was dying, and for the first time the > doctor looked at both of us and said " Jeff, I believe you are dying also " . > We were to have a follow up appointment with Dr. Jankovic on April 19th. > But when our internist saw Jeff last week, he got on the phone and they > moved the appointment up to tomorrow. So, Jeff is on his way to Houston as > I write. I can't go because of the kids, so one of his best friends is > going down with him. I'm afraid for him to drive alone all that way (6 > hours). > > Please keep us in your prayers. And, though the circumstances are > terrible, I'm glad to be back with the group. I feel like we need this > support now more than ever. And I appreciate every one in the group who > contributes. Thanks again... M. > > > 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 February 22, 2002 Report Share Posted February 22, 2002 -my dad has all the symptoms you describe, will keep reading to catch up on your situation. My prayers are with you. Cindy B. Jeff Maciejewski > Hi Everyone, > > Well, we're back. I haven't posted in a while, as we dropped out of the > group in December. The last communication I sent you all was that we were > going down to Baylor Medical to see Dr. Jankovic for a confirmation of MSA. > I had heard some of the horror stories of Dr. J's " bedside manner " , and > they were pretty much true to form. We were there for about 3 hours. I > must say the workup and history was very thorough, though it was done by a > neuro intern. Dr. Jankovic only came in for the consultation, which lasted > about 30 minutes. He felt that Jeff did not have MSA, as he was not > exhibiting some of the " classic " symptoms, namely the OH and sexual > dysfunction. He diagnosed Jeff as having " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He did confim neurological > dysfunction, as Jeff at that time was having intermitent problems with > balance, microwriting, urinary problems, mild sleep apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad (personality wise), > just pretty matter of fact, and pretty sure it was not MSA. > > Well, over the past three months, all of the " mild " symptoms Jeff had have > become severe, and on a few occasions, life threatening. His blood > pressure is all over the place. Lying down it's 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an example). He's passed out > half a dozen times now because he's stood up suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the morning. He's almost > wrecked the car a few times on his way to work because he can't keep his > eyes open, and he gets extremely disoriented. His swallowing problems are > alarming. He almost NEVER can swallow liquids properly. The other day he > said that he went over an hour without being able to swallow. He finally > got somewhere and put something solid in his mouth to swallow. He had his > first MAJOR bowel impaction. That one almost put him in the hospital. He > has both urinary and sexual dysfunction. He has terrible swelling in the > hands and feet, and his joints hurt terribly. His speech is also slurred > and very hard to understand. Yesterday morning his speech was almost > incomprehensible, sounded like someone who's had a stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he walks like an old man. He > feels totally demoralized, and we are both scared. Jeff feels as though > he's dying. Last Wednesday we went to our internist, who's been there > through all of this, and initially said he might have MSA. Jeff told him > how he felt, that he felt like he was dying, and for the first time the > doctor looked at both of us and said " Jeff, I believe you are dying also " . > We were to have a follow up appointment with Dr. Jankovic on April 19th. > But when our internist saw Jeff last week, he got on the phone and they > moved the appointment up to tomorrow. So, Jeff is on his way to Houston as > I write. I can't go because of the kids, so one of his best friends is > going down with him. I'm afraid for him to drive alone all that way (6 > hours). > > Please keep us in your prayers. And, though the circumstances are > terrible, I'm glad to be back with the group. I feel like we need this > support now more than ever. And I appreciate every one in the group who > contributes. Thanks again... M. > > > 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 March 5, 2002 Report Share Posted March 5, 2002 Dear , We are glad you are back with the group also. Our thoughts will be with you and Jeff tomorrow. Please let us know how it goes. Love, Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2002 Report Share Posted March 5, 2002 , I am sorry to hear that Jeff is having such a tough time of it. One thing I would like to share with you that some of the doctors who have tried to help me have got through my thick skull is that if they treat some of the symptoms, I may feel better and they may be in a better position to work out what is going on overall. To this end, they put me on a CPAP for Sleep Apnea. I cannot tell from your post whether Jeff is on CPAP or anything similar. My experience is that it has helped me reduce the level of fatigue I feel during the day. I'm still not jumping out of my skin, but I'm no longer going to sleep for no apparent reason either. Anyway, that my two bob's worth (20 cents) I hope things go better for Jeff and you. I am sure that having you in his corner gives him some measure of comfort. Regards Sowter --- Maciejewski katsmgt@...> wrote: > Hi Everyone, > > Well, we're back. I haven't posted in a while, as > we dropped out of the > group in December. The last communication I sent > you all was that we were > going down to Baylor Medical to see Dr. Jankovic for > a confirmation of MSA. > I had heard some of the horror stories of Dr. J's > " bedside manner " , and > they were pretty much true to form. We were there > for about 3 hours. I > must say the workup and history was very thorough, > though it was done by a > neuro intern. Dr. Jankovic only came in for the > consultation, which lasted > about 30 minutes. He felt that Jeff did not have > MSA, as he was not > exhibiting some of the " classic " symptoms, namely > the OH and sexual > dysfunction. He diagnosed Jeff as having > " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He > did confim neurological > dysfunction, as Jeff at that time was having > intermitent problems with > balance, microwriting, urinary problems, mild sleep > apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad > (personality wise), > just pretty matter of fact, and pretty sure it was > not MSA. > > Well, over the past three months, all of the " mild " > symptoms Jeff had have > become severe, and on a few occasions, life > threatening. His blood > pressure is all over the place. Lying down it's > 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an > example). He's passed out > half a dozen times now because he's stood up > suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the > morning. He's almost > wrecked the car a few times on his way to work > because he can't keep his > eyes open, and he gets extremely disoriented. His > swallowing problems are > alarming. He almost NEVER can swallow liquids > properly. The other day he > said that he went over an hour without being able to > swallow. He finally > got somewhere and put something solid in his mouth > to swallow. He had his > first MAJOR bowel impaction. That one almost put > him in the hospital. He > has both urinary and sexual dysfunction. He has > terrible swelling in the > hands and feet, and his joints hurt terribly. His > speech is also slurred > and very hard to understand. Yesterday morning his > speech was almost > incomprehensible, sounded like someone who's had a > stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he > walks like an old man. He > feels totally demoralized, and we are both scared. > Jeff feels as though > he's dying. Last Wednesday we went to our > internist, who's been there > through all of this, and initially said he might > have MSA. Jeff told him > how he felt, that he felt like he was dying, and for > the first time the > doctor looked at both of us and said " Jeff, I > believe you are dying also " . > We were to have a follow up appointment with Dr. > Jankovic on April 19th. > But when our internist saw Jeff last week, he got > on the phone and they > moved the appointment up to tomorrow. So, Jeff is > on his way to Houston as > I write. I can't go because of the kids, so one of > his best friends is > going down with him. I'm afraid for him to drive > alone all that way (6 > hours). > > Please keep us in your prayers. And, though the > circumstances are > terrible, I'm glad to be back with the group. I > feel like we need this > support now more than ever. And I appreciate every > one in the group who > contributes. Thanks again... M. > > > 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 March 5, 2002 Report Share Posted March 5, 2002 , I am sorry to hear that Jeff is having such a tough time of it. One thing I would like to share with you that some of the doctors who have tried to help me have got through my thick skull is that if they treat some of the symptoms, I may feel better and they may be in a better position to work out what is going on overall. To this end, they put me on a CPAP for Sleep Apnea. I cannot tell from your post whether Jeff is on CPAP or anything similar. My experience is that it has helped me reduce the level of fatigue I feel during the day. I'm still not jumping out of my skin, but I'm no longer going to sleep for no apparent reason either. Anyway, that my two bob's worth (20 cents) I hope things go better for Jeff and you. I am sure that having you in his corner gives him some measure of comfort. Regards Sowter --- Maciejewski katsmgt@...> wrote: > Hi Everyone, > > Well, we're back. I haven't posted in a while, as > we dropped out of the > group in December. The last communication I sent > you all was that we were > going down to Baylor Medical to see Dr. Jankovic for > a confirmation of MSA. > I had heard some of the horror stories of Dr. J's > " bedside manner " , and > they were pretty much true to form. We were there > for about 3 hours. I > must say the workup and history was very thorough, > though it was done by a > neuro intern. Dr. Jankovic only came in for the > consultation, which lasted > about 30 minutes. He felt that Jeff did not have > MSA, as he was not > exhibiting some of the " classic " symptoms, namely > the OH and sexual > dysfunction. He diagnosed Jeff as having > " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He > did confim neurological > dysfunction, as Jeff at that time was having > intermitent problems with > balance, microwriting, urinary problems, mild sleep > apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad > (personality wise), > just pretty matter of fact, and pretty sure it was > not MSA. > > Well, over the past three months, all of the " mild " > symptoms Jeff had have > become severe, and on a few occasions, life > threatening. His blood > pressure is all over the place. Lying down it's > 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an > example). He's passed out > half a dozen times now because he's stood up > suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the > morning. He's almost > wrecked the car a few times on his way to work > because he can't keep his > eyes open, and he gets extremely disoriented. His > swallowing problems are > alarming. He almost NEVER can swallow liquids > properly. The other day he > said that he went over an hour without being able to > swallow. He finally > got somewhere and put something solid in his mouth > to swallow. He had his > first MAJOR bowel impaction. That one almost put > him in the hospital. He > has both urinary and sexual dysfunction. He has > terrible swelling in the > hands and feet, and his joints hurt terribly. His > speech is also slurred > and very hard to understand. Yesterday morning his > speech was almost > incomprehensible, sounded like someone who's had a > stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he > walks like an old man. He > feels totally demoralized, and we are both scared. > Jeff feels as though > he's dying. Last Wednesday we went to our > internist, who's been there > through all of this, and initially said he might > have MSA. Jeff told him > how he felt, that he felt like he was dying, and for > the first time the > doctor looked at both of us and said " Jeff, I > believe you are dying also " . > We were to have a follow up appointment with Dr. > Jankovic on April 19th. > But when our internist saw Jeff last week, he got > on the phone and they > moved the appointment up to tomorrow. So, Jeff is > on his way to Houston as > I write. I can't go because of the kids, so one of > his best friends is > going down with him. I'm afraid for him to drive > alone all that way (6 > hours). > > Please keep us in your prayers. And, though the > circumstances are > terrible, I'm glad to be back with the group. I > feel like we need this > support now more than ever. And I appreciate every > one in the group who > contributes. Thanks again... M. > > > 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 March 5, 2002 Report Share Posted March 5, 2002 , I am sorry to hear that Jeff is having such a tough time of it. One thing I would like to share with you that some of the doctors who have tried to help me have got through my thick skull is that if they treat some of the symptoms, I may feel better and they may be in a better position to work out what is going on overall. To this end, they put me on a CPAP for Sleep Apnea. I cannot tell from your post whether Jeff is on CPAP or anything similar. My experience is that it has helped me reduce the level of fatigue I feel during the day. I'm still not jumping out of my skin, but I'm no longer going to sleep for no apparent reason either. Anyway, that my two bob's worth (20 cents) I hope things go better for Jeff and you. I am sure that having you in his corner gives him some measure of comfort. Regards Sowter --- Maciejewski katsmgt@...> wrote: > Hi Everyone, > > Well, we're back. I haven't posted in a while, as > we dropped out of the > group in December. The last communication I sent > you all was that we were > going down to Baylor Medical to see Dr. Jankovic for > a confirmation of MSA. > I had heard some of the horror stories of Dr. J's > " bedside manner " , and > they were pretty much true to form. We were there > for about 3 hours. I > must say the workup and history was very thorough, > though it was done by a > neuro intern. Dr. Jankovic only came in for the > consultation, which lasted > about 30 minutes. He felt that Jeff did not have > MSA, as he was not > exhibiting some of the " classic " symptoms, namely > the OH and sexual > dysfunction. He diagnosed Jeff as having > " paroxysmal dysautonomia " with > the possibility of MSA sometime down the road. He > did confim neurological > dysfunction, as Jeff at that time was having > intermitent problems with > balance, microwriting, urinary problems, mild sleep > apnea/narcolepsy and > mild swallowing problems. Dr. J actually wasn't bad > (personality wise), > just pretty matter of fact, and pretty sure it was > not MSA. > > Well, over the past three months, all of the " mild " > symptoms Jeff had have > become severe, and on a few occasions, life > threatening. His blood > pressure is all over the place. Lying down it's > 130/90, sitting up it goes > to 110/80, standing up goes to 80/59 (just an > example). He's passed out > half a dozen times now because he's stood up > suddenly. He has TERRIBLE > sleep apnea, and it leaves him exhausted in the > morning. He's almost > wrecked the car a few times on his way to work > because he can't keep his > eyes open, and he gets extremely disoriented. His > swallowing problems are > alarming. He almost NEVER can swallow liquids > properly. The other day he > said that he went over an hour without being able to > swallow. He finally > got somewhere and put something solid in his mouth > to swallow. He had his > first MAJOR bowel impaction. That one almost put > him in the hospital. He > has both urinary and sexual dysfunction. He has > terrible swelling in the > hands and feet, and his joints hurt terribly. His > speech is also slurred > and very hard to understand. Yesterday morning his > speech was almost > incomprehensible, sounded like someone who's had a > stroke. But after 30 > minutes or so it cleared up a bit. > > I feel so bad for him. He's 37 years old and he > walks like an old man. He > feels totally demoralized, and we are both scared. > Jeff feels as though > he's dying. Last Wednesday we went to our > internist, who's been there > through all of this, and initially said he might > have MSA. Jeff told him > how he felt, that he felt like he was dying, and for > the first time the > doctor looked at both of us and said " Jeff, I > believe you are dying also " . > We were to have a follow up appointment with Dr. > Jankovic on April 19th. > But when our internist saw Jeff last week, he got > on the phone and they > moved the appointment up to tomorrow. So, Jeff is > on his way to Houston as > I write. I can't go because of the kids, so one of > his best friends is > going down with him. I'm afraid for him to drive > alone all that way (6 > hours). > > Please keep us in your prayers. And, though the > circumstances are > terrible, I'm glad to be back with the group. I > feel like we need this > support now more than ever. And I appreciate every > one in the group who > contributes. Thanks again... M. > > > 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 March 7, 2002 Report Share Posted March 7, 2002 , Wondering how Jeff made out with his doctor's visit?. Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 , Wondering how Jeff made out with his doctor's visit?. Jean & Chrissie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Dear and Jeff, I am so angry after reading of the awful treatment Jeff received from that doctor. I think you should post his name so that others can be forewarned to not go to him. I also think you should file a complaint with the state medical board, the hospital, and any other governing organization. There is absolutely no excuse for that type of behavior. It reminded me so much of the treatment my parents and I received when my dad received his diagnosis of MSA. Had I known then what I know now I would have filed a complaint - or been very direct with the doctor at the time of the visit. In short, he was rude and aggressive with my mom. His exam seemed thorough, but he yelled at my mom about how she would have to do this and that. It was very intimidating and obviously still gets my ire up. Jeff, hang in there. Thinking of you both, Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Dear and Jeff, I am so angry after reading of the awful treatment Jeff received from that doctor. I think you should post his name so that others can be forewarned to not go to him. I also think you should file a complaint with the state medical board, the hospital, and any other governing organization. There is absolutely no excuse for that type of behavior. It reminded me so much of the treatment my parents and I received when my dad received his diagnosis of MSA. Had I known then what I know now I would have filed a complaint - or been very direct with the doctor at the time of the visit. In short, he was rude and aggressive with my mom. His exam seemed thorough, but he yelled at my mom about how she would have to do this and that. It was very intimidating and obviously still gets my ire up. Jeff, hang in there. Thinking of you both, Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Dear and Jeff, I am so angry after reading of the awful treatment Jeff received from that doctor. I think you should post his name so that others can be forewarned to not go to him. I also think you should file a complaint with the state medical board, the hospital, and any other governing organization. There is absolutely no excuse for that type of behavior. It reminded me so much of the treatment my parents and I received when my dad received his diagnosis of MSA. Had I known then what I know now I would have filed a complaint - or been very direct with the doctor at the time of the visit. In short, he was rude and aggressive with my mom. His exam seemed thorough, but he yelled at my mom about how she would have to do this and that. It was very intimidating and obviously still gets my ire up. Jeff, hang in there. Thinking of you both, Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Hi Jean and Chrissie- Disheartening to say the least. First of all, he didn't get to see Jankovic. He saw another doctor who had the most godawful bedside manner. It was obvious that he hadn't reviewed Jeffs file at all. He came in there with this " you shut up, you're just the patient " attitude. He told Jeff that he didn't have MSA, and THEN started reviewing his file in front of him...started to do some SERIOUS backpedaling. He decided that Jeff needed to " start from scratch " , and Jeff told the doc that he wasn't goingto repeat a whole bunch of tests he's already been through several times. The doctor ordered a bunch of tests for Jeff, including a sleep study and some specialized EMG's, but he wanted to do it right then, and have Jeff admitted to the hospital. Jeff tried to explain that their hospital was out of network, and that he would want to do the testing somewhere closer to home (Houston is 7 hours away). The doctor said, " Well, I guess you're just going to leave AMA " !!!! and stormed out the door. Thank God for Dr. Wang, the intern who did Jeff's original workup in December. She did the preconsult and workup on Wednesday, and was able to get Jeff calmed down somewhat after his interview with this doc. THEN he gives Jeff a bill for $855 for the visit. Now realize that on our first visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was in there less than 10! And they did the EXACT same workup. Dr. J's fee was $325. Jeff told the cashier that there was no way he was going to pay $855 for the abuse he got from that doctor. The doctor came out to the cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of everyone) that he never wanted to see him again!! Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and demoralized. He could barely function yesterday and last night was so upset that he threw all his meds in the trash (he retrieved them a little later) He's not eating well, he's not sleeping well at all, so he can't get past this. It seems in the week since his doctor actually came out and told him he was dying, that he feels this futility in everything he does. And frankly, I don't know how to handle it. What do I tell him? A big part of me wants to scream at him and tell him to fight this with everything he's got, and the other small part that sees him suffer wants me to tell him it's OK, it's your body, if it's too much for you then just let go.....he looks to me for the validation of his actions, and I don't even know what those actions should be!!! He's a very proud man, does not accept help graciously. What's it going to be like for him when he can't drive, can't walk, can't make it to the bathroom on his own. He was better (spirit-wise) this morning. He went in to work for a little while, which is encouraging. He just loves this support group, even though he doesn't post. He reads the experiences everyone shares and it makes him feel so much better to know that there are people out there who really UNDERSTAND. Thank you all for that blessing in our lives!! I want to get you all a list of some of the tests the doctor wants to run....maybe you can shed some light on them. Will post them later. Thanks for your thoughts, M. Re: Jeff Maciejewski , Wondering how Jeff made out with his doctor's visit?. Jean & Chrissie 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 March 8, 2002 Report Share Posted March 8, 2002 Hi Jean and Chrissie- Disheartening to say the least. First of all, he didn't get to see Jankovic. He saw another doctor who had the most godawful bedside manner. It was obvious that he hadn't reviewed Jeffs file at all. He came in there with this " you shut up, you're just the patient " attitude. He told Jeff that he didn't have MSA, and THEN started reviewing his file in front of him...started to do some SERIOUS backpedaling. He decided that Jeff needed to " start from scratch " , and Jeff told the doc that he wasn't goingto repeat a whole bunch of tests he's already been through several times. The doctor ordered a bunch of tests for Jeff, including a sleep study and some specialized EMG's, but he wanted to do it right then, and have Jeff admitted to the hospital. Jeff tried to explain that their hospital was out of network, and that he would want to do the testing somewhere closer to home (Houston is 7 hours away). The doctor said, " Well, I guess you're just going to leave AMA " !!!! and stormed out the door. Thank God for Dr. Wang, the intern who did Jeff's original workup in December. She did the preconsult and workup on Wednesday, and was able to get Jeff calmed down somewhat after his interview with this doc. THEN he gives Jeff a bill for $855 for the visit. Now realize that on our first visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was in there less than 10! And they did the EXACT same workup. Dr. J's fee was $325. Jeff told the cashier that there was no way he was going to pay $855 for the abuse he got from that doctor. The doctor came out to the cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of everyone) that he never wanted to see him again!! Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and demoralized. He could barely function yesterday and last night was so upset that he threw all his meds in the trash (he retrieved them a little later) He's not eating well, he's not sleeping well at all, so he can't get past this. It seems in the week since his doctor actually came out and told him he was dying, that he feels this futility in everything he does. And frankly, I don't know how to handle it. What do I tell him? A big part of me wants to scream at him and tell him to fight this with everything he's got, and the other small part that sees him suffer wants me to tell him it's OK, it's your body, if it's too much for you then just let go.....he looks to me for the validation of his actions, and I don't even know what those actions should be!!! He's a very proud man, does not accept help graciously. What's it going to be like for him when he can't drive, can't walk, can't make it to the bathroom on his own. He was better (spirit-wise) this morning. He went in to work for a little while, which is encouraging. He just loves this support group, even though he doesn't post. He reads the experiences everyone shares and it makes him feel so much better to know that there are people out there who really UNDERSTAND. Thank you all for that blessing in our lives!! I want to get you all a list of some of the tests the doctor wants to run....maybe you can shed some light on them. Will post them later. Thanks for your thoughts, M. Re: Jeff Maciejewski , Wondering how Jeff made out with his doctor's visit?. Jean & Chrissie 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 March 8, 2002 Report Share Posted March 8, 2002 Hi Jean and Chrissie- Disheartening to say the least. First of all, he didn't get to see Jankovic. He saw another doctor who had the most godawful bedside manner. It was obvious that he hadn't reviewed Jeffs file at all. He came in there with this " you shut up, you're just the patient " attitude. He told Jeff that he didn't have MSA, and THEN started reviewing his file in front of him...started to do some SERIOUS backpedaling. He decided that Jeff needed to " start from scratch " , and Jeff told the doc that he wasn't goingto repeat a whole bunch of tests he's already been through several times. The doctor ordered a bunch of tests for Jeff, including a sleep study and some specialized EMG's, but he wanted to do it right then, and have Jeff admitted to the hospital. Jeff tried to explain that their hospital was out of network, and that he would want to do the testing somewhere closer to home (Houston is 7 hours away). The doctor said, " Well, I guess you're just going to leave AMA " !!!! and stormed out the door. Thank God for Dr. Wang, the intern who did Jeff's original workup in December. She did the preconsult and workup on Wednesday, and was able to get Jeff calmed down somewhat after his interview with this doc. THEN he gives Jeff a bill for $855 for the visit. Now realize that on our first visit, Jankovic spent at least 30 minutes talking to Jeff. This yahoo was in there less than 10! And they did the EXACT same workup. Dr. J's fee was $325. Jeff told the cashier that there was no way he was going to pay $855 for the abuse he got from that doctor. The doctor came out to the cashier's desk, scratched out $855, wrote in N/C and told Jeff (in front of everyone) that he never wanted to see him again!! Jeff got in from Houston Wednesday night and was COMPLETELY wiped out and demoralized. He could barely function yesterday and last night was so upset that he threw all his meds in the trash (he retrieved them a little later) He's not eating well, he's not sleeping well at all, so he can't get past this. It seems in the week since his doctor actually came out and told him he was dying, that he feels this futility in everything he does. And frankly, I don't know how to handle it. What do I tell him? A big part of me wants to scream at him and tell him to fight this with everything he's got, and the other small part that sees him suffer wants me to tell him it's OK, it's your body, if it's too much for you then just let go.....he looks to me for the validation of his actions, and I don't even know what those actions should be!!! He's a very proud man, does not accept help graciously. What's it going to be like for him when he can't drive, can't walk, can't make it to the bathroom on his own. He was better (spirit-wise) this morning. He went in to work for a little while, which is encouraging. He just loves this support group, even though he doesn't post. He reads the experiences everyone shares and it makes him feel so much better to know that there are people out there who really UNDERSTAND. Thank you all for that blessing in our lives!! I want to get you all a list of some of the tests the doctor wants to run....maybe you can shed some light on them. Will post them later. Thanks for your thoughts, M. Re: Jeff Maciejewski , Wondering how Jeff made out with his doctor's visit?. Jean & Chrissie 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 March 8, 2002 Report Share Posted March 8, 2002 Jeff just got home, Here is the list of tests the doctor recommended Sleep study (uro)sp?dynamic or (mo)dynamic EMG of bladder, neck and anal sphincter (you can imagine Jeff's reaction to THAT one!!) I know why the sleep study-he has serious apnea, but why the EMG's? M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Jeff just got home, Here is the list of tests the doctor recommended Sleep study (uro)sp?dynamic or (mo)dynamic EMG of bladder, neck and anal sphincter (you can imagine Jeff's reaction to THAT one!!) I know why the sleep study-he has serious apnea, but why the EMG's? M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 Jeff just got home, Here is the list of tests the doctor recommended Sleep study (uro)sp?dynamic or (mo)dynamic EMG of bladder, neck and anal sphincter (you can imagine Jeff's reaction to THAT one!!) I know why the sleep study-he has serious apnea, but why the EMG's? M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 , On the " Never want to see you again " , I'm sure that is mutual with Jeff ) So I would ignore it and move on to another doctor. I am not clear on why Jeff went back after seeing Dr. Jankovic. Does he have new symptoms? Does his normal neurologist have some specific concerns? Why can't your PCP or regular neuro handle everyday things? List Jeff's symptoms here and you will get several suggestions on medicines which may help. Then take those suggestions to your doctor and ask if they think one might help Jeff. Many of us see experts in movement disorders and they still try various things until they find the correct medicine or run out of ideas. There is NO one set of medicines that will help all MSA patients. What was Dr. Jankovic's diagnoses? If it was MSA, you have to concentrate on treating specific symptoms rather than the disorder itself. Find a doctor you can work with and trust them to help you. Tests are okay if they are aimed at finding something to help, but tests to prove it is MSA are useless as there is no cure for MSA, only treatment of symptoms can help. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2002 Report Share Posted March 8, 2002 , I realize that you're probably overwhelmed as it is, but I personally couldn't let that kind of treatment by a physician go un-addressed. If I had experienced such un-professional treatment, I'd be writing a letter to the Hospital Board of Trustees. It would probably be futile, but if these types of indiscretions are never reported, there is no history for the hospital to use to take action even if they want to. 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...
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