Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Bill In the short time I`ve been with this group I have really come to see you as a very valuable resource of information.At present I only have a possible dx of SDS but in any event I do experience daily severe chest pain which has been well investigated and I can only assume it to be part of my illness.My problem is with medication. I have tried T3`s with some relief,Neurotin, with littlehelp and now my GP wants me to try Morphine-She knows nothing about MSA and will be learning along side me -I would appreciate your expanding on the advice you recently gave on the dangers of pain meds for people with Autonomic nervous system problems.Are there any safe ones ? Thanks for staying with the group and for taking the time to help. Marg Manson Werre wrote: Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 28, 2002 Report Share Posted May 28, 2002 Marge, I would strongly suggest you contact a neurologist experienced in movement disorders before trying morphine as it can exacerbate (make worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) muscles and pain killers only act to deaden the pain - they do not relieve the problem. On the other hand, muscle relaxants often relax the muscles - if not, Botox shots will probably help for a time. Pain killers act to suppress the pain centers in the brain, but have neurological backlash symptoms which can mimic MSA symptoms. In fact, even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a day instead of 3 pills a day) can cause a person to have MSA like symptoms - loss of balance, confusion, slurred speech, fatigue, and movement problems. Whatever doctor gave you the diagnoses of MSA (or SDS) should know that morphine could be harmful - especially with chest pain involved. Have they tried an acid reflux pill such as Prevacid or Nextus for the chest pain? MSA patients often have acid reflux and almost everyone takes pills for it. P.S. I have learned MOST of what I know from patients telling us what their neurologists have told them. Thank God many of us found good neurologists and other doctors use this info when we describe it to them. MSA is a neurological disorder. Hope this helps, Bill Werre -------------------------------------------------------- marg manson wrote: > Bill > > In the short time I`ve been with this group I have really come to see > you as a very valuable resource of information.At present I only have > a possible dx of SDS but in any event I do experience daily severe > chest pain which has been well investigated and I can only assume it > to be part of my illness.My problem is with medication. I have tried > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > to try Morphine-She knows nothing about MSA and will be learning along > side me -I would appreciate your expanding on the advice you recently > gave on the dangers of pain meds for people with Autonomic nervous > system problems.Are there any safe ones ? Thanks for staying with the > group and for taking the time to help. > > Marg Manson > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Marg Manson, Please, Bill does not need his ego inflated more. :>) Re: Pain, medicines and MSA Bill In the short time I`ve been with this group I have really come to see you as a very valuable resource of information.At present I only have a possible dx of SDS but in any event I do experience daily severe chest pain which has been well investigated and I can only assume it to be part of my illness.My problem is with medication. I have tried T3`s with some relief,Neurotin, with littlehelp and now my GP wants me to try Morphine-She knows nothing about MSA and will be learning along side me -I would appreciate your expanding on the advice you recently gave on the dangers of pain meds for people with Autonomic nervous system problems.Are there any safe ones ? Thanks for staying with the group and for taking the time to help. Marg Manson Werre wrote: Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 28, 2002 Report Share Posted May 28, 2002 Marge, ) I have learned from Jim also ) We learn by discussing with open minds, but I trust neurologists with neurological problems over anecdotal answers. Bill Werre Jim wrote: Marg Manson, Please, Bill does not need his ego inflated more. :>) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2002 Report Share Posted May 28, 2002 Bill, There are two other drawbacks with the opiates. These are: 1. The opiates work well in relieving pain, but, they loose their ability to relieve pain snd a higher dose is needed to get the same relief. 2. This goes on untill a lethal dose is reached. This how euthanasia works in this country. 3. It's intresting you mentioned Soma because it is probablu is the most potent muscle relanant on the msrket. While working as a pharmaceutical rep., a common fraise became common. It was: " Soma causes coma:. Soma also has some of the narcotic side effects. The orthopedic surgeons Rx most of it by these doctors. An orthopedic surgeon explained this when he had a postoperative surgical patient would not stay in bed as ordered, he would switch them to Soma with no more problems keeping them in bed. God Bless, Judy & Jim Stark Re: Pain, medicines and MSA > Marge, > > I would strongly suggest you contact a neurologist experienced in > movement disorders before trying morphine as it can exacerbate (make > worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) > muscles and pain killers only act to deaden the pain - they do not > relieve the problem. On the other hand, muscle relaxants often relax > the muscles - if not, Botox shots will probably help for a time. Pain > killers act to suppress the pain centers in the brain, but have > neurological backlash symptoms which can mimic MSA symptoms. In fact, > even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a > day instead of 3 pills a day) can cause a person to have MSA like > symptoms - loss of balance, confusion, slurred speech, fatigue, and > movement problems. > > Whatever doctor gave you the diagnoses of MSA (or SDS) should know that > morphine could be harmful - especially with chest pain involved. Have > they tried an acid reflux pill such as Prevacid or Nextus for the chest > pain? MSA patients often have acid reflux and almost everyone takes > pills for it. > > P.S. I have learned MOST of what I know from patients telling us what > their neurologists have told them. Thank God many of us found good > neurologists and other doctors use this info when we describe it to > them. MSA is a neurological disorder. > > Hope this helps, Bill Werre > -------------------------------------------------------- > > marg manson wrote: > > > Bill > > > > In the short time I`ve been with this group I have really come to see > > you as a very valuable resource of information.At present I only have > > a possible dx of SDS but in any event I do experience daily severe > > chest pain which has been well investigated and I can only assume it > > to be part of my illness.My problem is with medication. I have tried > > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > > to try Morphine-She knows nothing about MSA and will be learning along > > side me -I would appreciate your expanding on the advice you recently > > gave on the dangers of pain meds for people with Autonomic nervous > > system problems.Are there any safe ones ? Thanks for staying with the > > group and for taking the time to help. > > > > Marg Manson > > > > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Bill, There are two other drawbacks with the opiates. These are: 1. The opiates work well in relieving pain, but, they loose their ability to relieve pain snd a higher dose is needed to get the same relief. 2. This goes on untill a lethal dose is reached. This how euthanasia works in this country. 3. It's intresting you mentioned Soma because it is probablu is the most potent muscle relanant on the msrket. While working as a pharmaceutical rep., a common fraise became common. It was: " Soma causes coma:. Soma also has some of the narcotic side effects. The orthopedic surgeons Rx most of it by these doctors. An orthopedic surgeon explained this when he had a postoperative surgical patient would not stay in bed as ordered, he would switch them to Soma with no more problems keeping them in bed. God Bless, Judy & Jim Stark Re: Pain, medicines and MSA > Marge, > > I would strongly suggest you contact a neurologist experienced in > movement disorders before trying morphine as it can exacerbate (make > worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) > muscles and pain killers only act to deaden the pain - they do not > relieve the problem. On the other hand, muscle relaxants often relax > the muscles - if not, Botox shots will probably help for a time. Pain > killers act to suppress the pain centers in the brain, but have > neurological backlash symptoms which can mimic MSA symptoms. In fact, > even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a > day instead of 3 pills a day) can cause a person to have MSA like > symptoms - loss of balance, confusion, slurred speech, fatigue, and > movement problems. > > Whatever doctor gave you the diagnoses of MSA (or SDS) should know that > morphine could be harmful - especially with chest pain involved. Have > they tried an acid reflux pill such as Prevacid or Nextus for the chest > pain? MSA patients often have acid reflux and almost everyone takes > pills for it. > > P.S. I have learned MOST of what I know from patients telling us what > their neurologists have told them. Thank God many of us found good > neurologists and other doctors use this info when we describe it to > them. MSA is a neurological disorder. > > Hope this helps, Bill Werre > -------------------------------------------------------- > > marg manson wrote: > > > Bill > > > > In the short time I`ve been with this group I have really come to see > > you as a very valuable resource of information.At present I only have > > a possible dx of SDS but in any event I do experience daily severe > > chest pain which has been well investigated and I can only assume it > > to be part of my illness.My problem is with medication. I have tried > > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > > to try Morphine-She knows nothing about MSA and will be learning along > > side me -I would appreciate your expanding on the advice you recently > > gave on the dangers of pain meds for people with Autonomic nervous > > system problems.Are there any safe ones ? Thanks for staying with the > > group and for taking the time to help. > > > > Marg Manson > > > > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Bill, There are two other drawbacks with the opiates. These are: 1. The opiates work well in relieving pain, but, they loose their ability to relieve pain snd a higher dose is needed to get the same relief. 2. This goes on untill a lethal dose is reached. This how euthanasia works in this country. 3. It's intresting you mentioned Soma because it is probablu is the most potent muscle relanant on the msrket. While working as a pharmaceutical rep., a common fraise became common. It was: " Soma causes coma:. Soma also has some of the narcotic side effects. The orthopedic surgeons Rx most of it by these doctors. An orthopedic surgeon explained this when he had a postoperative surgical patient would not stay in bed as ordered, he would switch them to Soma with no more problems keeping them in bed. God Bless, Judy & Jim Stark Re: Pain, medicines and MSA > Marge, > > I would strongly suggest you contact a neurologist experienced in > movement disorders before trying morphine as it can exacerbate (make > worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) > muscles and pain killers only act to deaden the pain - they do not > relieve the problem. On the other hand, muscle relaxants often relax > the muscles - if not, Botox shots will probably help for a time. Pain > killers act to suppress the pain centers in the brain, but have > neurological backlash symptoms which can mimic MSA symptoms. In fact, > even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a > day instead of 3 pills a day) can cause a person to have MSA like > symptoms - loss of balance, confusion, slurred speech, fatigue, and > movement problems. > > Whatever doctor gave you the diagnoses of MSA (or SDS) should know that > morphine could be harmful - especially with chest pain involved. Have > they tried an acid reflux pill such as Prevacid or Nextus for the chest > pain? MSA patients often have acid reflux and almost everyone takes > pills for it. > > P.S. I have learned MOST of what I know from patients telling us what > their neurologists have told them. Thank God many of us found good > neurologists and other doctors use this info when we describe it to > them. MSA is a neurological disorder. > > Hope this helps, Bill Werre > -------------------------------------------------------- > > marg manson wrote: > > > Bill > > > > In the short time I`ve been with this group I have really come to see > > you as a very valuable resource of information.At present I only have > > a possible dx of SDS but in any event I do experience daily severe > > chest pain which has been well investigated and I can only assume it > > to be part of my illness.My problem is with medication. I have tried > > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > > to try Morphine-She knows nothing about MSA and will be learning along > > side me -I would appreciate your expanding on the advice you recently > > gave on the dangers of pain meds for people with Autonomic nervous > > system problems.Are there any safe ones ? Thanks for staying with the > > group and for taking the time to help. > > > > Marg Manson > > > > > > > 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 May 28, 2002 Report Share Posted May 28, 2002 Marg, When the man is right he is right. Cardia or chest pains are not compatible with pain killers. Have you been inspected for angina (nitro spray might help). Angina is very painful, can happen as a consequence of irregular heartbeat or not enough oxygen getting to parts of the heart muscle (cardiac charley horse). I have angina due to arrythmia, as a result of dysautomania - not stress on the heart - all I can do is lie back, take deep deliberate breaths and relax as completely as humanly possible, and eat a banana or have some milk to keep potasium and calcium levels in check. So far my doctors have not found medication that will not aggravate the situation, since the problem is not the heart but the CNS. The ECG's make for interesting reading. I have my heart checked every six months - mostly to evaluate for wear and tear. Neurontin has made the heartbeat more regualr than it was. Morphine can dangerously suppress your respiration, you would need careful monitoring. At 5/28/02 08:19 PM Tuesday, you wrote: Marge, I would strongly suggest you contact a neurologist experienced in movement disorders before trying morphine as it can exacerbate (make worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) muscles and pain killers only act to deaden the pain - they do not relieve the problem. On the other hand, muscle relaxants often relax the muscles - if not, Botox shots will probably help for a time. Pain killers act to suppress the pain centers in the brain, but have neurological backlash symptoms which can mimic MSA symptoms. In fact, even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a day instead of 3 pills a day) can cause a person to have MSA like symptoms - loss of balance, confusion, slurred speech, fatigue, and movement problems. Whatever doctor gave you the diagnoses of MSA (or SDS) should know that morphine could be harmful - especially with chest pain involved. Have they tried an acid reflux pill such as Prevacid or Nextus for the chest pain? MSA patients often have acid reflux and almost everyone takes pills for it. P.S. I have learned MOST of what I know from patients telling us what their neurologists have told them. Thank God many of us found good neurologists and other doctors use this info when we describe it to them. MSA is a neurological disorder. Hope this helps, Bill Werre -------------------------------------------------------- marg manson wrote: > Bill > > In the short time I`ve been with this group I have really come to see > you as a very valuable resource of information.At present I only have > a possible dx of SDS but in any event I do experience daily severe > chest pain which has been well investigated and I can only assume it > to be part of my illness.My problem is with medication. I have tried > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > to try Morphine-She knows nothing about MSA and will be learning along > side me -I would appreciate your expanding on the advice you recently > gave on the dangers of pain meds for people with Autonomic nervous > system problems.Are there any safe ones ? Thanks for staying with the > group and for taking the time to help. > > Marg Manson > > 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 May 28, 2002 Report Share Posted May 28, 2002 Marg, When the man is right he is right. Cardia or chest pains are not compatible with pain killers. Have you been inspected for angina (nitro spray might help). Angina is very painful, can happen as a consequence of irregular heartbeat or not enough oxygen getting to parts of the heart muscle (cardiac charley horse). I have angina due to arrythmia, as a result of dysautomania - not stress on the heart - all I can do is lie back, take deep deliberate breaths and relax as completely as humanly possible, and eat a banana or have some milk to keep potasium and calcium levels in check. So far my doctors have not found medication that will not aggravate the situation, since the problem is not the heart but the CNS. The ECG's make for interesting reading. I have my heart checked every six months - mostly to evaluate for wear and tear. Neurontin has made the heartbeat more regualr than it was. Morphine can dangerously suppress your respiration, you would need careful monitoring. At 5/28/02 08:19 PM Tuesday, you wrote: Marge, I would strongly suggest you contact a neurologist experienced in movement disorders before trying morphine as it can exacerbate (make worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) muscles and pain killers only act to deaden the pain - they do not relieve the problem. On the other hand, muscle relaxants often relax the muscles - if not, Botox shots will probably help for a time. Pain killers act to suppress the pain centers in the brain, but have neurological backlash symptoms which can mimic MSA symptoms. In fact, even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a day instead of 3 pills a day) can cause a person to have MSA like symptoms - loss of balance, confusion, slurred speech, fatigue, and movement problems. Whatever doctor gave you the diagnoses of MSA (or SDS) should know that morphine could be harmful - especially with chest pain involved. Have they tried an acid reflux pill such as Prevacid or Nextus for the chest pain? MSA patients often have acid reflux and almost everyone takes pills for it. P.S. I have learned MOST of what I know from patients telling us what their neurologists have told them. Thank God many of us found good neurologists and other doctors use this info when we describe it to them. MSA is a neurological disorder. Hope this helps, Bill Werre -------------------------------------------------------- marg manson wrote: > Bill > > In the short time I`ve been with this group I have really come to see > you as a very valuable resource of information.At present I only have > a possible dx of SDS but in any event I do experience daily severe > chest pain which has been well investigated and I can only assume it > to be part of my illness.My problem is with medication. I have tried > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > to try Morphine-She knows nothing about MSA and will be learning along > side me -I would appreciate your expanding on the advice you recently > gave on the dangers of pain meds for people with Autonomic nervous > system problems.Are there any safe ones ? Thanks for staying with the > group and for taking the time to help. > > Marg Manson > > 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 May 28, 2002 Report Share Posted May 28, 2002 Marg, When the man is right he is right. Cardia or chest pains are not compatible with pain killers. Have you been inspected for angina (nitro spray might help). Angina is very painful, can happen as a consequence of irregular heartbeat or not enough oxygen getting to parts of the heart muscle (cardiac charley horse). I have angina due to arrythmia, as a result of dysautomania - not stress on the heart - all I can do is lie back, take deep deliberate breaths and relax as completely as humanly possible, and eat a banana or have some milk to keep potasium and calcium levels in check. So far my doctors have not found medication that will not aggravate the situation, since the problem is not the heart but the CNS. The ECG's make for interesting reading. I have my heart checked every six months - mostly to evaluate for wear and tear. Neurontin has made the heartbeat more regualr than it was. Morphine can dangerously suppress your respiration, you would need careful monitoring. At 5/28/02 08:19 PM Tuesday, you wrote: Marge, I would strongly suggest you contact a neurologist experienced in movement disorders before trying morphine as it can exacerbate (make worse) many MSA symptoms. Most MSA pain is caused by tight (cramped) muscles and pain killers only act to deaden the pain - they do not relieve the problem. On the other hand, muscle relaxants often relax the muscles - if not, Botox shots will probably help for a time. Pain killers act to suppress the pain centers in the brain, but have neurological backlash symptoms which can mimic MSA symptoms. In fact, even things like Soma (a muscle relaxant) taken to extreme (6-8 pills a day instead of 3 pills a day) can cause a person to have MSA like symptoms - loss of balance, confusion, slurred speech, fatigue, and movement problems. Whatever doctor gave you the diagnoses of MSA (or SDS) should know that morphine could be harmful - especially with chest pain involved. Have they tried an acid reflux pill such as Prevacid or Nextus for the chest pain? MSA patients often have acid reflux and almost everyone takes pills for it. P.S. I have learned MOST of what I know from patients telling us what their neurologists have told them. Thank God many of us found good neurologists and other doctors use this info when we describe it to them. MSA is a neurological disorder. Hope this helps, Bill Werre -------------------------------------------------------- marg manson wrote: > Bill > > In the short time I`ve been with this group I have really come to see > you as a very valuable resource of information.At present I only have > a possible dx of SDS but in any event I do experience daily severe > chest pain which has been well investigated and I can only assume it > to be part of my illness.My problem is with medication. I have tried > T3`s with some relief,Neurotin, with littlehelp and now my GP wants me > to try Morphine-She knows nothing about MSA and will be learning along > side me -I would appreciate your expanding on the advice you recently > gave on the dangers of pain meds for people with Autonomic nervous > system problems.Are there any safe ones ? Thanks for staying with the > group and for taking the time to help. > > Marg Manson > > 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 May 28, 2002 Report Share Posted May 28, 2002 Marge, Keep your mind on this track for now. Make sure you mention the possibility of acid reflux to your doctor, as that is a common problem with MSA. From experience I can tell you that it is very close to angina as I had both until they fixed my heart problems with bypass surgery to get more oxygen to the heart muscle. I still have acid reflux but use Ranidine to control it. Charlotte used Prevacid for acid reflux. Take care, Bill Werre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 He does do a good job though, don't you think? Re: Pain, medicines and MSA Bill In the short time I`ve been with this group I have really come to see you as a very valuable resource of information.At present I only have a possible dx of SDS but in any event I do experience daily severe chest pain which has been well investigated and I can only assume it to be part of my illness.My problem is with medication. I have tried T3`s with some relief,Neurotin, with littlehelp and now my GP wants me to try Morphine-She knows nothing about MSA and will be learning along side me -I would appreciate your expanding on the advice you recently gave on the dangers of pain meds for people with Autonomic nervous system problems.Are there any safe ones ? Thanks for staying with the group and for taking the time to help. Marg Manson Werre wrote: Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 29, 2002 Report Share Posted May 29, 2002 Hi Bill, I peeked at your mail to Belinda. I am very sure you do a good job with this group. Sorry if I snapped Aussie Bill Pain, medicines and MSA Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 29, 2002 Report Share Posted May 29, 2002 Hi Bill, I peeked at your mail to Belinda. I am very sure you do a good job with this group. Sorry if I snapped Aussie Bill Pain, medicines and MSA Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 29, 2002 Report Share Posted May 29, 2002 Hi Bill, I peeked at your mail to Belinda. I am very sure you do a good job with this group. Sorry if I snapped Aussie Bill Pain, medicines and MSA Belinda, I am not trying to pick on anyone ) MSA and CBGD are very similar disorders and may be caused by two different proteins. Both cause swallowing problems, ataxia, etc. Pain may be slightly more associated with CBGD than MSA because dystonia (extreme muscle cramping) is more associated with CBGD. You are completely welcome here as MSA has most symptoms that CBGD has. I don't want anyone to leave the list and I have said that for the three years I have been on the list. My problem with medicines is ONLY that a few medicines (like opiates) cause severe problems for MSA (and CBGD) patients. If a pain specialist tells you to take them, and knows you have a progressive movement disorder, I have no problem with that. However, MSA & CBGD are life-threatening disorders and continued use of opiates can cause heart problems ESPECIALLY for people with autonomic failure such as MSA causes. People with autonomic failure often have a problem with heart rhythm anyway and opiates can further mess up that problem causing death. Therefore, neurologists do NOT usually give opiates to MSA patients for more than a few days at a time and only for really bad pain. I got upset when some members of the list started criticizing neurologists and admit they are taking opiates. They are accepting the fact that the opiates can kill them and take opiates for the fact that they are in great pain, which most MSA patients do not have. Opiates and some other medicines mentioned are NOT usually given to MSA patients as they cause dizziness, confusion, balance problems, constipation, fatigue, etc. Do those symptoms sound familiar to you? Would you want any of those problems to get worse for you? Add to this that they are considered addictive and most neurologists will not prescribe them for MSA patients. I can see finding one neurologist who is a problem or not right for you, maybe two neurologists. But these people are saying that many neurologists were bad. I have a problem with that. I have worked with eight neurologists and from MY experience, you get out of a doctor/patient relationship exactly what you put into it. I have even challenged a noted surgeon and we worked out our problem with each of us giving somewhat and many people have said he is impossible to disagree with. Sorry, but he did come to the ER at 9 PM on a Friday night (in a Tux) and replace Charlotte's PEG tube. I consider that a reasonable act for a doctor. I have had doctors return my calls at 3 AM and meet me at the ER to make sure things were handled properly, so when people start saying "all" these neurologists are bad or incompetent, I get upset. Even "all" politicians are not bad and most are even good at least some of the time. There are good and bad in every walk of life, and no absolutes with humans. I do believe I have the right to MY opinion also. If anyone feels they have the right to take something which might kill them, I will defend that right - I feel they DO have that right. However, if they tell people on this list that it makes them feel good without explaining that that drug can kill you, that invades someone else's rights to me. I am still on the list to try to help MSA and movement disorder patients, I have no other interest as Charlotte died many months ago. Like cigarettes can help keep your BP up if you have orthostatic hypotension, BUT they can kill you through lung, heart or cancer problems. So opiates can kill your pain, BUT they can stop your heart also. I feel those warnings are necessary. You need this info before asking your doctor for that strong a pain killer. Charlotte kept Tylenol 3 with Codeine on hand and used exactly 11 of them for the last six months of her life. Did she have pain at times, YES! She had severe dystonia in her right hand and arm. The neurologists said it was due to the muscle cramps and put her into a Botox shot treatment to work on the cramping. YES, Botox is dangerous in large doses but it is not for MOST people in small minute doses. Take care, Bill Werre 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 May 29, 2002 Report Share Posted May 29, 2002 Bill: Do you have any wisdom to share on Oxycontin as a pain management med? Terry takes 10mg once a day for a bursitis problem. As far as we know she does not have any autonomic symproms. Her Dx is MSA/SND. Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Bill: Do you have any wisdom to share on Oxycontin as a pain management med? Terry takes 10mg once a day for a bursitis problem. As far as we know she does not have any autonomic symproms. Her Dx is MSA/SND. Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Bill: Do you have any wisdom to share on Oxycontin as a pain management med? Terry takes 10mg once a day for a bursitis problem. As far as we know she does not have any autonomic symproms. Her Dx is MSA/SND. Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 Bill, I am a big boy and can take criticism without getting mad. I started on this list with a small feud with Aussie Anne and we are the best of friends as you saw. I disagree with many people on the list about politics and we are still the best of friends. This is a family type situation and although we disagree at times we are related by symptoms even if it is called other things. I welcome discussion and debate, even if it does not produce agreement - it stimulates thought and leads to greater knowledge. If I could not get along with people I disagree with, I would never have lasted 38 years in the manufacturing engineering business. My job made reaching compromise a necessity. My primary concern is to stop anything which can harm people on the list. I strongly feel that narcotic pain relievers should be a last resort for people with movement disorders and even then only enough to deaden the pain. Narcotics CAN make movement disorders worse and if you have autonomic heart problems, they can kill you. They work by deadening brain cells and MSA patients have enough dead brain cells already. All letters (emails) on the list are open to all and intended that way. If you have thoughts you want private, send them privately. Take care, Bill ------------------------------------------------- Bill Pilgrim wrote: Hi Bill,I peeked at your mail to Belinda. I am very sure you do a good job with this group. Sorry if I snappedAussie Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 , I could not find it exactly, but it seems to be a very low dosage as the nearest thing I could find was up to 15 mg per day four times a day. Get the fact sheet which comes with it and read up on side effects. If she does not require more and more to maintain her pain management, she is not addicted to it. It seems to be in the narcotic family (but I'm not sure of that) so I would watch for side effects. Charlotte had a small bottle of a narcotic pain reliever and we had an understanding that she could use it only when other non-narcotic meds would not work. She had the bottle and about 25% of it a year later when she died. The Botox helped greatly and so did the Baclofen with her pain. However, her pain was not caused by inflammation of tendons like Bursitis. It may be that is an anti-inflamatory medicine. If you have no sheet, ask your pharmacist. Take care, Bill ================================================= Sennewald wrote: > Bill: > > Do you have any wisdom to share on Oxycontin as a pain management > med? Terry takes 10mg once a day for a bursitis problem. As far as we > know she does not have any autonomic symproms. Her Dx is MSA/SND. > > Sennewald Charlottesville, Virginia > > 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 May 29, 2002 Report Share Posted May 29, 2002 In a message dated 05/29/2002 7:59:11 AM US Mountain Standard Time, b.werre@... writes: << My primary concern is to stop anything which can harm people on the list. I strongly feel that narcotic pain relievers should be a last resort for people with movement disorders and even then only enough to deaden the pain. Narcotics CAN make movement disorders worse and if you have autonomic heart problems, they can kill you. They work by deadening brain cells and MSA patients have enough dead brain cells already. >> Please listen to Bill on this. My dad learned this the hard way before he was diagnosed. My dad was taking Propoxephine (Darvocet) for arthritis given to him by a VA rheumatologist. He was given too much and became addicted. I was amazed at how much one doctor allowed him to have! That was when his symptoms began. He was in such terrible shape and he still would ask when he could have his next pill. His electrolytes were a mess and he could not function. We were so afraid we would lose him then and we came close. After a long hospital stay and 3 weeks in a nursing home he began to improve. The improvement has been VERY slow and he is now much better. For a long time we thought that my dad's problems were from the drugs and did lots of research on Propoxephine poisoning. I was sure that was what he had though his neurologist knew he had SDS. My dad's neurologist said that he should NEVER take another opiate. For a long time he would ask for the pills and we of course had disposed of them. Please remember too that an excellent and well respected doctor gave him this amount. A MAJOR PART Of my dad's problems were due to the toxicity of this drug. It made the MSA symptoms worse. I can finally say that we have my dad back again. He still has this disease but it is not made worse by the Propoxephine. I am sharing this because I care about how you are and don't want this to happen to you. There are many documents and abstracts on opioid danger and addiction on PubMed Query. Jean (Phoenix) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 In a message dated 05/29/2002 7:59:11 AM US Mountain Standard Time, b.werre@... writes: << My primary concern is to stop anything which can harm people on the list. I strongly feel that narcotic pain relievers should be a last resort for people with movement disorders and even then only enough to deaden the pain. Narcotics CAN make movement disorders worse and if you have autonomic heart problems, they can kill you. They work by deadening brain cells and MSA patients have enough dead brain cells already. >> Please listen to Bill on this. My dad learned this the hard way before he was diagnosed. My dad was taking Propoxephine (Darvocet) for arthritis given to him by a VA rheumatologist. He was given too much and became addicted. I was amazed at how much one doctor allowed him to have! That was when his symptoms began. He was in such terrible shape and he still would ask when he could have his next pill. His electrolytes were a mess and he could not function. We were so afraid we would lose him then and we came close. After a long hospital stay and 3 weeks in a nursing home he began to improve. The improvement has been VERY slow and he is now much better. For a long time we thought that my dad's problems were from the drugs and did lots of research on Propoxephine poisoning. I was sure that was what he had though his neurologist knew he had SDS. My dad's neurologist said that he should NEVER take another opiate. For a long time he would ask for the pills and we of course had disposed of them. Please remember too that an excellent and well respected doctor gave him this amount. A MAJOR PART Of my dad's problems were due to the toxicity of this drug. It made the MSA symptoms worse. I can finally say that we have my dad back again. He still has this disease but it is not made worse by the Propoxephine. I am sharing this because I care about how you are and don't want this to happen to you. There are many documents and abstracts on opioid danger and addiction on PubMed Query. Jean (Phoenix) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2002 Report Share Posted May 29, 2002 I'll throw my 2 cents worth in here. It was Oxycontin that caused my last hospitalization... May 1 - 6, after taking only 2 pills. It caused a hives type reaction in me. ly, after that... this drug scares the be-gee-bee's out of me. Deborah aka Tenacity From: Sennewald Reply-To: shydrager To: shydrager Subject: Re: Pain, medicines and MSA Date: Wed, 29 May 2002 09:23:01 -0400 Bill: Do you have any wisdom to share on Oxycontin as a pain management med? Terry takes 10mg once a day for a bursitis problem. As far as we know she does not have any autonomic symproms. Her Dx is MSA/SND. Sennewald Charlottesville, Virginia 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 May 29, 2002 Report Share Posted May 29, 2002 Deborah, Actually any medicine can do that to you. I took Bactrim DS for about a week after my kidney operation, them whent out in the sun one day for about 30 minutes and spent the next few days getting rid of hives. Take care, Bill Werre ----------------------------------------------- Deborah Setzer wrote: I'll throw my 2 cents worth in here. It was Oxycontin that caused my last hospitalization... May 1 - 6, after taking only 2 pills. It caused a hives type reaction in me. ly, after that... this drug scares the be-gee-bee's out of me. Quote Link to comment Share on other sites More sharing options...
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