Guest guest Posted February 18, 2002 Report Share Posted February 18, 2002 You are very young to have so many problems, but the group is very helpful and have many answers to vexing situations. Welcome--we all wish you the very best possible. Lou ReynoldsAt 10:03 PM 2/18/2002 +0000, you wrote: >I have been reading posts for a little over a month, and it is time >for me to briefly introduce myself. It is my birthday today, age 27. > >I was diagnosed with probable MSA at the end of 2001 despite my young >age. I was pursuing PhD studies at the University of Chicago when a >tremor in my right hand appeared October 2001. Mind you, I have had >autonomic dysfunction dating back to nine years of age, but my >bloodpressure was in October no longer holding on many days even with >45mg/day of Midodrine. Things seemed to go downhill starting with a >spell where I felt as if I was in an earthquake-I fell down unlike >any of the hundreds of other falls when my bp dropped. The list of >symptoms grew each week: tingling/numbness on my right side, >spaciness/confusion, loss of balance, stuttering at times, my right >leg dragged, seizure like spells (w/o the mental accompaniment), >tremor migrates at times to left side,... Now, I heaviness on my >right side at times (esp my right arm), severe bladder spasms, >terrible full body muscle contractions (dystonia?) that can last >fifteen minutes with pauses dispersed throughout... Looking back, I >noticed some small things over the past year including how I tripped >occassional even on days when I felt well. It ends up that my right >foot drops limp at times. I cannot think right now what other >symptoms I am leaving out. I am in a wheelchair about half the time >(on good weeks less). But, of course, the wheelchair keeps me active >and safe, especially when I am having bad bouts of spaciness and lack >of balance. Additionally, I can do more in the wheelchair w/o getting >tired. I hope to soon get push assisted rims, though, b/c I cannot >often push my self for long periods owing to my weakness on my right >side, etc. > >To continue, my wife, who has been amazing, left a job she loved. I >took a leave of absense from school. Now, we are living near family >in Georgia (my wife works part-time at my parents' furniture store). >My spirits are good most of the time. Recently, I have had some >depression-mostly b/c it is hard having so much family around >asserting opinions, etc., and of course the illness is hard at times. >I hope to soon regain the peace I have had at times through the >course of this illness. > >I am sure many of you have questions. Feel free to ask. My >medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses >between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg >AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- >cholonergic for bladder spasms. (lots of water, no caffeine, little >sugar, no MSG, no nitrates, etc.) > >It is wonderful to see such a great group of people helping each >other. And it is great to know that people are right there if you >have questions about MSA. > >Thank you. > > >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 18, 2002 Report Share Posted February 18, 2002 You are very young to have so many problems, but the group is very helpful and have many answers to vexing situations. Welcome--we all wish you the very best possible. Lou ReynoldsAt 10:03 PM 2/18/2002 +0000, you wrote: >I have been reading posts for a little over a month, and it is time >for me to briefly introduce myself. It is my birthday today, age 27. > >I was diagnosed with probable MSA at the end of 2001 despite my young >age. I was pursuing PhD studies at the University of Chicago when a >tremor in my right hand appeared October 2001. Mind you, I have had >autonomic dysfunction dating back to nine years of age, but my >bloodpressure was in October no longer holding on many days even with >45mg/day of Midodrine. Things seemed to go downhill starting with a >spell where I felt as if I was in an earthquake-I fell down unlike >any of the hundreds of other falls when my bp dropped. The list of >symptoms grew each week: tingling/numbness on my right side, >spaciness/confusion, loss of balance, stuttering at times, my right >leg dragged, seizure like spells (w/o the mental accompaniment), >tremor migrates at times to left side,... Now, I heaviness on my >right side at times (esp my right arm), severe bladder spasms, >terrible full body muscle contractions (dystonia?) that can last >fifteen minutes with pauses dispersed throughout... Looking back, I >noticed some small things over the past year including how I tripped >occassional even on days when I felt well. It ends up that my right >foot drops limp at times. I cannot think right now what other >symptoms I am leaving out. I am in a wheelchair about half the time >(on good weeks less). But, of course, the wheelchair keeps me active >and safe, especially when I am having bad bouts of spaciness and lack >of balance. Additionally, I can do more in the wheelchair w/o getting >tired. I hope to soon get push assisted rims, though, b/c I cannot >often push my self for long periods owing to my weakness on my right >side, etc. > >To continue, my wife, who has been amazing, left a job she loved. I >took a leave of absense from school. Now, we are living near family >in Georgia (my wife works part-time at my parents' furniture store). >My spirits are good most of the time. Recently, I have had some >depression-mostly b/c it is hard having so much family around >asserting opinions, etc., and of course the illness is hard at times. >I hope to soon regain the peace I have had at times through the >course of this illness. > >I am sure many of you have questions. Feel free to ask. My >medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses >between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg >AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- >cholonergic for bladder spasms. (lots of water, no caffeine, little >sugar, no MSG, no nitrates, etc.) > >It is wonderful to see such a great group of people helping each >other. And it is great to know that people are right there if you >have questions about MSA. > >Thank you. > > >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 20, 2002 Report Share Posted February 20, 2002 where in ga? me 55 in Kennesaw...... call k Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 20, 2002 Report Share Posted February 20, 2002 Hi and happy birthday, Boy, you do seem too young to be suffering this much. I am 42 and still going through the process of being officially diagnosed. The symptoms are progressing very rapidly. I think i may have had this since 2000. The emgs of my upper and lower extremities were painful enough yhat i hope i never need another one. I am not on any meds yet, (Poconocrazy) Introduction-Age 27 > > I have been reading posts for a little over a month, and it is time > for me to briefly introduce myself. It is my birthday today, age 27. > > I was diagnosed with probable MSA at the end of 2001 despite my young > age. I was pursuing PhD studies at the University of Chicago when a > tremor in my right hand appeared October 2001. Mind you, I have had > autonomic dysfunction dating back to nine years of age, but my > bloodpressure was in October no longer holding on many days even with > 45mg/day of Midodrine. Things seemed to go downhill starting with a > spell where I felt as if I was in an earthquake-I fell down unlike > any of the hundreds of other falls when my bp dropped. The list of > symptoms grew each week: tingling/numbness on my right side, > spaciness/confusion, loss of balance, stuttering at times, my right > leg dragged, seizure like spells (w/o the mental accompaniment), > tremor migrates at times to left side,... Now, I heaviness on my > right side at times (esp my right arm), severe bladder spasms, > terrible full body muscle contractions (dystonia?) that can last > fifteen minutes with pauses dispersed throughout... Looking back, I > noticed some small things over the past year including how I tripped > occassional even on days when I felt well. It ends up that my right > foot drops limp at times. I cannot think right now what other > symptoms I am leaving out. I am in a wheelchair about half the time > (on good weeks less). But, of course, the wheelchair keeps me active > and safe, especially when I am having bad bouts of spaciness and lack > of balance. Additionally, I can do more in the wheelchair w/o getting > tired. I hope to soon get push assisted rims, though, b/c I cannot > often push my self for long periods owing to my weakness on my right > side, etc. > > To continue, my wife, who has been amazing, left a job she loved. I > took a leave of absense from school. Now, we are living near family > in Georgia (my wife works part-time at my parents' furniture store). > My spirits are good most of the time. Recently, I have had some > depression-mostly b/c it is hard having so much family around > asserting opinions, etc., and of course the illness is hard at times. > I hope to soon regain the peace I have had at times through the > course of this illness. > > I am sure many of you have questions. Feel free to ask. My > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > cholonergic for bladder spasms. (lots of water, no caffeine, little > sugar, no MSG, no nitrates, etc.) > > It is wonderful to see such a great group of people helping each > other. And it is great to know that people are right there if you > have questions about MSA. > > Thank you. > > > 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 20, 2002 Report Share Posted February 20, 2002 Hi and happy birthday, Boy, you do seem too young to be suffering this much. I am 42 and still going through the process of being officially diagnosed. The symptoms are progressing very rapidly. I think i may have had this since 2000. The emgs of my upper and lower extremities were painful enough yhat i hope i never need another one. I am not on any meds yet, (Poconocrazy) Introduction-Age 27 > > I have been reading posts for a little over a month, and it is time > for me to briefly introduce myself. It is my birthday today, age 27. > > I was diagnosed with probable MSA at the end of 2001 despite my young > age. I was pursuing PhD studies at the University of Chicago when a > tremor in my right hand appeared October 2001. Mind you, I have had > autonomic dysfunction dating back to nine years of age, but my > bloodpressure was in October no longer holding on many days even with > 45mg/day of Midodrine. Things seemed to go downhill starting with a > spell where I felt as if I was in an earthquake-I fell down unlike > any of the hundreds of other falls when my bp dropped. The list of > symptoms grew each week: tingling/numbness on my right side, > spaciness/confusion, loss of balance, stuttering at times, my right > leg dragged, seizure like spells (w/o the mental accompaniment), > tremor migrates at times to left side,... Now, I heaviness on my > right side at times (esp my right arm), severe bladder spasms, > terrible full body muscle contractions (dystonia?) that can last > fifteen minutes with pauses dispersed throughout... Looking back, I > noticed some small things over the past year including how I tripped > occassional even on days when I felt well. It ends up that my right > foot drops limp at times. I cannot think right now what other > symptoms I am leaving out. I am in a wheelchair about half the time > (on good weeks less). But, of course, the wheelchair keeps me active > and safe, especially when I am having bad bouts of spaciness and lack > of balance. Additionally, I can do more in the wheelchair w/o getting > tired. I hope to soon get push assisted rims, though, b/c I cannot > often push my self for long periods owing to my weakness on my right > side, etc. > > To continue, my wife, who has been amazing, left a job she loved. I > took a leave of absense from school. Now, we are living near family > in Georgia (my wife works part-time at my parents' furniture store). > My spirits are good most of the time. Recently, I have had some > depression-mostly b/c it is hard having so much family around > asserting opinions, etc., and of course the illness is hard at times. > I hope to soon regain the peace I have had at times through the > course of this illness. > > I am sure many of you have questions. Feel free to ask. My > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > cholonergic for bladder spasms. (lots of water, no caffeine, little > sugar, no MSG, no nitrates, etc.) > > It is wonderful to see such a great group of people helping each > other. And it is great to know that people are right there if you > have questions about MSA. > > Thank you. > > > 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 20, 2002 Report Share Posted February 20, 2002 Hi and happy birthday, Boy, you do seem too young to be suffering this much. I am 42 and still going through the process of being officially diagnosed. The symptoms are progressing very rapidly. I think i may have had this since 2000. The emgs of my upper and lower extremities were painful enough yhat i hope i never need another one. I am not on any meds yet, (Poconocrazy) Introduction-Age 27 > > I have been reading posts for a little over a month, and it is time > for me to briefly introduce myself. It is my birthday today, age 27. > > I was diagnosed with probable MSA at the end of 2001 despite my young > age. I was pursuing PhD studies at the University of Chicago when a > tremor in my right hand appeared October 2001. Mind you, I have had > autonomic dysfunction dating back to nine years of age, but my > bloodpressure was in October no longer holding on many days even with > 45mg/day of Midodrine. Things seemed to go downhill starting with a > spell where I felt as if I was in an earthquake-I fell down unlike > any of the hundreds of other falls when my bp dropped. The list of > symptoms grew each week: tingling/numbness on my right side, > spaciness/confusion, loss of balance, stuttering at times, my right > leg dragged, seizure like spells (w/o the mental accompaniment), > tremor migrates at times to left side,... Now, I heaviness on my > right side at times (esp my right arm), severe bladder spasms, > terrible full body muscle contractions (dystonia?) that can last > fifteen minutes with pauses dispersed throughout... Looking back, I > noticed some small things over the past year including how I tripped > occassional even on days when I felt well. It ends up that my right > foot drops limp at times. I cannot think right now what other > symptoms I am leaving out. I am in a wheelchair about half the time > (on good weeks less). But, of course, the wheelchair keeps me active > and safe, especially when I am having bad bouts of spaciness and lack > of balance. Additionally, I can do more in the wheelchair w/o getting > tired. I hope to soon get push assisted rims, though, b/c I cannot > often push my self for long periods owing to my weakness on my right > side, etc. > > To continue, my wife, who has been amazing, left a job she loved. I > took a leave of absense from school. Now, we are living near family > in Georgia (my wife works part-time at my parents' furniture store). > My spirits are good most of the time. Recently, I have had some > depression-mostly b/c it is hard having so much family around > asserting opinions, etc., and of course the illness is hard at times. > I hope to soon regain the peace I have had at times through the > course of this illness. > > I am sure many of you have questions. Feel free to ask. My > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > cholonergic for bladder spasms. (lots of water, no caffeine, little > sugar, no MSG, no nitrates, etc.) > > It is wonderful to see such a great group of people helping each > other. And it is great to know that people are right there if you > have questions about MSA. > > Thank you. > > > 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 20, 2002 Report Share Posted February 20, 2002 > Hi age 27, While you seem to have many symptoms of MSA (and some that are not usually found with MSA), some things do not seem to fit. You mention that you had autonomic dysfunction at age nine and are now 27 years old, that is certainly not normal for MSA. Did you see a movement disorder specialist for a diagnoses? MSA patients are usually in a wheelchair (fulltime) by 5-7 years. Dystonia is permanent spasm (not 15 minute spasm) which draws the body part into an " alien hand " type of thing which can not be moved. It takes medicines or Botox shots to get the hand or body part to move. Dystonia is rare in pure MSA. Although a lack of exercise can cause it even in MSA. You mention " spaciness/confusion " which is a sign of infection with any brain disorder. However, it too, is rare in MSA. Since all the rest of this (other than autonomic problems) came on in the last 3-4 months, I would strongly suggest that you get tested for infection (all types). You could have PAF, POTS or some other lessor brain disorder with an infection which is causing the problem. MSA does not appear and go that far in 3-4 months after sitting dormant for 18 years. Other things that could be involved - were you told not to take alcohol or barbiturates with those medicines? Did you know that pseudoephedrine (ingredients in many cough/cold combination products) could be harmful to you while on those medicines? Does the doctor that diagnosed you as MSA know that you are taking the Atenolol? Be SURE you tell every doctor ALL of the medicines AND 'natural supplements' you are taking, they are not mindreaders. What they do not know, could kill you. Take care, Bill Werre ======================================================== > > Subject: Introduction-Age 27 > > > > > I have been reading posts for a little over a month, and it is time > > for me to briefly introduce myself. It is my birthday today, age 27. > > > > I was diagnosed with probable MSA at the end of 2001 despite my young > > age. I was pursuing PhD studies at the University of Chicago when a > > tremor in my right hand appeared October 2001. Mind you, I have had > > autonomic dysfunction dating back to nine years of age, but my > > bloodpressure was in October no longer holding on many days even with > > 45mg/day of Midodrine. Things seemed to go downhill starting with a > > spell where I felt as if I was in an earthquake-I fell down unlike > > any of the hundreds of other falls when my bp dropped. The list of > > symptoms grew each week: tingling/numbness on my right side, > > spaciness/confusion, loss of balance, stuttering at times, my right > > leg dragged, seizure like spells (w/o the mental accompaniment), > > tremor migrates at times to left side,... Now, I heaviness on my > > right side at times (esp my right arm), severe bladder spasms, > > terrible full body muscle contractions (dystonia?) that can last > > fifteen minutes with pauses dispersed throughout... Looking back, I > > noticed some small things over the past year including how I tripped > > occassional even on days when I felt well. It ends up that my right > > foot drops limp at times. I cannot think right now what other > > symptoms I am leaving out. I am in a wheelchair about half the time > > (on good weeks less). But, of course, the wheelchair keeps me active > > and safe, especially when I am having bad bouts of spaciness and lack > > of balance. Additionally, I can do more in the wheelchair w/o getting > > tired. I hope to soon get push assisted rims, though, b/c I cannot > > often push my self for long periods owing to my weakness on my right > > side, etc. > > > > To continue, my wife, who has been amazing, left a job she loved. I > > took a leave of absense from school. Now, we are living near family > > in Georgia (my wife works part-time at my parents' furniture store). > > My spirits are good most of the time. Recently, I have had some > > depression-mostly b/c it is hard having so much family around > > asserting opinions, etc., and of course the illness is hard at times. > > I hope to soon regain the peace I have had at times through the > > course of this illness. > > > > I am sure many of you have questions. Feel free to ask. My > > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > > cholonergic for bladder spasms. (lots of water, no caffeine, little > > sugar, no MSG, no nitrates, etc.) > > > > It is wonderful to see such a great group of people helping each > > other. And it is great to know that people are right there if you > > have questions about MSA. > > > > Thank you. > > > > > > 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 20, 2002 Report Share Posted February 20, 2002 > Hi age 27, While you seem to have many symptoms of MSA (and some that are not usually found with MSA), some things do not seem to fit. You mention that you had autonomic dysfunction at age nine and are now 27 years old, that is certainly not normal for MSA. Did you see a movement disorder specialist for a diagnoses? MSA patients are usually in a wheelchair (fulltime) by 5-7 years. Dystonia is permanent spasm (not 15 minute spasm) which draws the body part into an " alien hand " type of thing which can not be moved. It takes medicines or Botox shots to get the hand or body part to move. Dystonia is rare in pure MSA. Although a lack of exercise can cause it even in MSA. You mention " spaciness/confusion " which is a sign of infection with any brain disorder. However, it too, is rare in MSA. Since all the rest of this (other than autonomic problems) came on in the last 3-4 months, I would strongly suggest that you get tested for infection (all types). You could have PAF, POTS or some other lessor brain disorder with an infection which is causing the problem. MSA does not appear and go that far in 3-4 months after sitting dormant for 18 years. Other things that could be involved - were you told not to take alcohol or barbiturates with those medicines? Did you know that pseudoephedrine (ingredients in many cough/cold combination products) could be harmful to you while on those medicines? Does the doctor that diagnosed you as MSA know that you are taking the Atenolol? Be SURE you tell every doctor ALL of the medicines AND 'natural supplements' you are taking, they are not mindreaders. What they do not know, could kill you. Take care, Bill Werre ======================================================== > > Subject: Introduction-Age 27 > > > > > I have been reading posts for a little over a month, and it is time > > for me to briefly introduce myself. It is my birthday today, age 27. > > > > I was diagnosed with probable MSA at the end of 2001 despite my young > > age. I was pursuing PhD studies at the University of Chicago when a > > tremor in my right hand appeared October 2001. Mind you, I have had > > autonomic dysfunction dating back to nine years of age, but my > > bloodpressure was in October no longer holding on many days even with > > 45mg/day of Midodrine. Things seemed to go downhill starting with a > > spell where I felt as if I was in an earthquake-I fell down unlike > > any of the hundreds of other falls when my bp dropped. The list of > > symptoms grew each week: tingling/numbness on my right side, > > spaciness/confusion, loss of balance, stuttering at times, my right > > leg dragged, seizure like spells (w/o the mental accompaniment), > > tremor migrates at times to left side,... Now, I heaviness on my > > right side at times (esp my right arm), severe bladder spasms, > > terrible full body muscle contractions (dystonia?) that can last > > fifteen minutes with pauses dispersed throughout... Looking back, I > > noticed some small things over the past year including how I tripped > > occassional even on days when I felt well. It ends up that my right > > foot drops limp at times. I cannot think right now what other > > symptoms I am leaving out. I am in a wheelchair about half the time > > (on good weeks less). But, of course, the wheelchair keeps me active > > and safe, especially when I am having bad bouts of spaciness and lack > > of balance. Additionally, I can do more in the wheelchair w/o getting > > tired. I hope to soon get push assisted rims, though, b/c I cannot > > often push my self for long periods owing to my weakness on my right > > side, etc. > > > > To continue, my wife, who has been amazing, left a job she loved. I > > took a leave of absense from school. Now, we are living near family > > in Georgia (my wife works part-time at my parents' furniture store). > > My spirits are good most of the time. Recently, I have had some > > depression-mostly b/c it is hard having so much family around > > asserting opinions, etc., and of course the illness is hard at times. > > I hope to soon regain the peace I have had at times through the > > course of this illness. > > > > I am sure many of you have questions. Feel free to ask. My > > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > > cholonergic for bladder spasms. (lots of water, no caffeine, little > > sugar, no MSG, no nitrates, etc.) > > > > It is wonderful to see such a great group of people helping each > > other. And it is great to know that people are right there if you > > have questions about MSA. > > > > Thank you. > > > > > > 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 20, 2002 Report Share Posted February 20, 2002 > Hi age 27, While you seem to have many symptoms of MSA (and some that are not usually found with MSA), some things do not seem to fit. You mention that you had autonomic dysfunction at age nine and are now 27 years old, that is certainly not normal for MSA. Did you see a movement disorder specialist for a diagnoses? MSA patients are usually in a wheelchair (fulltime) by 5-7 years. Dystonia is permanent spasm (not 15 minute spasm) which draws the body part into an " alien hand " type of thing which can not be moved. It takes medicines or Botox shots to get the hand or body part to move. Dystonia is rare in pure MSA. Although a lack of exercise can cause it even in MSA. You mention " spaciness/confusion " which is a sign of infection with any brain disorder. However, it too, is rare in MSA. Since all the rest of this (other than autonomic problems) came on in the last 3-4 months, I would strongly suggest that you get tested for infection (all types). You could have PAF, POTS or some other lessor brain disorder with an infection which is causing the problem. MSA does not appear and go that far in 3-4 months after sitting dormant for 18 years. Other things that could be involved - were you told not to take alcohol or barbiturates with those medicines? Did you know that pseudoephedrine (ingredients in many cough/cold combination products) could be harmful to you while on those medicines? Does the doctor that diagnosed you as MSA know that you are taking the Atenolol? Be SURE you tell every doctor ALL of the medicines AND 'natural supplements' you are taking, they are not mindreaders. What they do not know, could kill you. Take care, Bill Werre ======================================================== > > Subject: Introduction-Age 27 > > > > > I have been reading posts for a little over a month, and it is time > > for me to briefly introduce myself. It is my birthday today, age 27. > > > > I was diagnosed with probable MSA at the end of 2001 despite my young > > age. I was pursuing PhD studies at the University of Chicago when a > > tremor in my right hand appeared October 2001. Mind you, I have had > > autonomic dysfunction dating back to nine years of age, but my > > bloodpressure was in October no longer holding on many days even with > > 45mg/day of Midodrine. Things seemed to go downhill starting with a > > spell where I felt as if I was in an earthquake-I fell down unlike > > any of the hundreds of other falls when my bp dropped. The list of > > symptoms grew each week: tingling/numbness on my right side, > > spaciness/confusion, loss of balance, stuttering at times, my right > > leg dragged, seizure like spells (w/o the mental accompaniment), > > tremor migrates at times to left side,... Now, I heaviness on my > > right side at times (esp my right arm), severe bladder spasms, > > terrible full body muscle contractions (dystonia?) that can last > > fifteen minutes with pauses dispersed throughout... Looking back, I > > noticed some small things over the past year including how I tripped > > occassional even on days when I felt well. It ends up that my right > > foot drops limp at times. I cannot think right now what other > > symptoms I am leaving out. I am in a wheelchair about half the time > > (on good weeks less). But, of course, the wheelchair keeps me active > > and safe, especially when I am having bad bouts of spaciness and lack > > of balance. Additionally, I can do more in the wheelchair w/o getting > > tired. I hope to soon get push assisted rims, though, b/c I cannot > > often push my self for long periods owing to my weakness on my right > > side, etc. > > > > To continue, my wife, who has been amazing, left a job she loved. I > > took a leave of absense from school. Now, we are living near family > > in Georgia (my wife works part-time at my parents' furniture store). > > My spirits are good most of the time. Recently, I have had some > > depression-mostly b/c it is hard having so much family around > > asserting opinions, etc., and of course the illness is hard at times. > > I hope to soon regain the peace I have had at times through the > > course of this illness. > > > > I am sure many of you have questions. Feel free to ask. My > > medications are Midodrine: 10 mg every 5 hours w/ 5mg mid-doses > > between (45 to 50 mg/day), Florinef .05 AM .05 PM, Atenolol 62.5mg > > AM, 50mg PM, Potassium Chloride, Magnesium Chloride, and anti- > > cholonergic for bladder spasms. (lots of water, no caffeine, little > > sugar, no MSG, no nitrates, etc.) > > > > It is wonderful to see such a great group of people helping each > > other. And it is great to know that people are right there if you > > have questions about MSA. > > > > Thank you. > > > > > > 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 20, 2002 Report Share Posted February 20, 2002 Tom, Glad to see you are still here and able to type. Take care, Bill Quote Link to comment Share on other sites More sharing options...
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