Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 thanks rose. did you listen to Vanilla Fudge by any chanc? At 01:20 PM 5/10/01 -0400, you wrote: Hi Pat! My Name is Rose. Welcome! ---------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 thanks rose. did you listen to Vanilla Fudge by any chanc? At 01:20 PM 5/10/01 -0400, you wrote: Hi Pat! My Name is Rose. Welcome! ---------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Debbie, thanks for your help and encouragement. It seems to simple, if something in the brain isn't working right, such as speech and balance, why can't they FIX IT???? We can send men to the moon, etc.......I'm just not as knowledgeable in this area, as some other medical areas. I'm sorry about your loss-still fairly recent. They called my dad's diagnosis "PP" first. Still not sure he has Parkinson's of any kind. My mom told me last night they ordered some type of walker with brakes. His pride has prevented that so far. Its become a matter of safety. Thanks. RE: new to group Welcome Cindy, though sorry you are here. My mother Joyce (died 11/5/00, 71) was first diagnosed with PD (many are) and within a year, rediagnosed with MSA. There is no way to be sure without an autopsy. In my mother's case, they came to this conclusion because she didn't get great benefit from the PD drugs, her symptoms progressed faster than with PD, and she showed both extrapyramidal (as with PD) and pyramidal (with Parkinson's Plus) signs. I don't know exactly what this means except to say that it indicated different areas of the brain being affected. She had many of the symptom you describe your dad as having--she also had a severe head/neck flex that curled her head into her chest. There was no pain, but it was her most disabling symptom. She fell all the time, slurred speech, slowness, some tremor. Her symptoms surfaced after being laid off after 14 years of work. (I am sorry about your brother but glad to hear he is in remission). Stress does make everything worse. My main reason for writing, apart from welcoming you, is to comment on the Artane. This was among the drug mix my mother was given (she tried many). She was on Artane for about a year when they weaned her off. She felt it helped with her balance (at first, at least), but later she was hallucinating a lot and feeling cloudy, etc. The neuro said that Artane is often not a good fit for older patients. This is not to say that your dad will develop such symptoms (which, by the way, can come from a lot of the drugs). However, when my mom was finally off the Artane, things in that department improved. Stay tuned. You have come to the right place. DebbieIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Debbie, thanks for your help and encouragement. It seems to simple, if something in the brain isn't working right, such as speech and balance, why can't they FIX IT???? We can send men to the moon, etc.......I'm just not as knowledgeable in this area, as some other medical areas. I'm sorry about your loss-still fairly recent. They called my dad's diagnosis "PP" first. Still not sure he has Parkinson's of any kind. My mom told me last night they ordered some type of walker with brakes. His pride has prevented that so far. Its become a matter of safety. Thanks. RE: new to group Welcome Cindy, though sorry you are here. My mother Joyce (died 11/5/00, 71) was first diagnosed with PD (many are) and within a year, rediagnosed with MSA. There is no way to be sure without an autopsy. In my mother's case, they came to this conclusion because she didn't get great benefit from the PD drugs, her symptoms progressed faster than with PD, and she showed both extrapyramidal (as with PD) and pyramidal (with Parkinson's Plus) signs. I don't know exactly what this means except to say that it indicated different areas of the brain being affected. She had many of the symptom you describe your dad as having--she also had a severe head/neck flex that curled her head into her chest. There was no pain, but it was her most disabling symptom. She fell all the time, slurred speech, slowness, some tremor. Her symptoms surfaced after being laid off after 14 years of work. (I am sorry about your brother but glad to hear he is in remission). Stress does make everything worse. My main reason for writing, apart from welcoming you, is to comment on the Artane. This was among the drug mix my mother was given (she tried many). She was on Artane for about a year when they weaned her off. She felt it helped with her balance (at first, at least), but later she was hallucinating a lot and feeling cloudy, etc. The neuro said that Artane is often not a good fit for older patients. This is not to say that your dad will develop such symptoms (which, by the way, can come from a lot of the drugs). However, when my mom was finally off the Artane, things in that department improved. Stay tuned. You have come to the right place. DebbieIf you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Thanks for suggestion, my sister lives near Akron, so she could take them there. Will get on web and see what they are up to-looked at it for cancer, also doing a lot of new heart procedures there. Enjoy Boston! Re: new to group Cindy B. Baylor is a fine place to go, but there are closer places to you. The Cleveland Clinic in Cleveland Ohio is known for it's work with MSA also. Yes, stress can make the MSA symptoms worse. However the major thing that causes rapid deterioration is infection, so they should check him carefully for all types of infection (UTI, blood, pneumonia and yeast). The only SURE way of telling if he has MSA is autopsy, but that doesn't sound appropriate. There is no cure at this time for MSA, so care is restricted to treating the symptoms as well as possible. If your doctors are trying that, that is as good as you can do. Is he having any problems with confusion or memory? Mirapex has been know to make that worse in MSA. Have they tried him on Sinemet (if he has the PD rigidity). Other meds MSA patients try are Amantadine and Baclofen. Actually some people here have tried every PD med going as well as MS meds and even Altzheimer's meds. Unfortunately there is no one medicine that helps everyone with MSA, so keep records and work with your doctors to find the best combination for your dad. Take care, Bill Werre Beck wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by VanderbiltUniv. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a littleover a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment frompartner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, stillgoing into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad'sdiagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an "older generation" drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said "get a referral and come on down" for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Thanks for suggestion, my sister lives near Akron, so she could take them there. Will get on web and see what they are up to-looked at it for cancer, also doing a lot of new heart procedures there. Enjoy Boston! Re: new to group Cindy B. Baylor is a fine place to go, but there are closer places to you. The Cleveland Clinic in Cleveland Ohio is known for it's work with MSA also. Yes, stress can make the MSA symptoms worse. However the major thing that causes rapid deterioration is infection, so they should check him carefully for all types of infection (UTI, blood, pneumonia and yeast). The only SURE way of telling if he has MSA is autopsy, but that doesn't sound appropriate. There is no cure at this time for MSA, so care is restricted to treating the symptoms as well as possible. If your doctors are trying that, that is as good as you can do. Is he having any problems with confusion or memory? Mirapex has been know to make that worse in MSA. Have they tried him on Sinemet (if he has the PD rigidity). Other meds MSA patients try are Amantadine and Baclofen. Actually some people here have tried every PD med going as well as MS meds and even Altzheimer's meds. Unfortunately there is no one medicine that helps everyone with MSA, so keep records and work with your doctors to find the best combination for your dad. Take care, Bill Werre Beck wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by VanderbiltUniv. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a littleover a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment frompartner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, stillgoing into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad'sdiagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an "older generation" drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said "get a referral and come on down" for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2002 Report Share Posted February 22, 2002 Thanks for suggestion, my sister lives near Akron, so she could take them there. Will get on web and see what they are up to-looked at it for cancer, also doing a lot of new heart procedures there. Enjoy Boston! Re: new to group Cindy B. Baylor is a fine place to go, but there are closer places to you. The Cleveland Clinic in Cleveland Ohio is known for it's work with MSA also. Yes, stress can make the MSA symptoms worse. However the major thing that causes rapid deterioration is infection, so they should check him carefully for all types of infection (UTI, blood, pneumonia and yeast). The only SURE way of telling if he has MSA is autopsy, but that doesn't sound appropriate. There is no cure at this time for MSA, so care is restricted to treating the symptoms as well as possible. If your doctors are trying that, that is as good as you can do. Is he having any problems with confusion or memory? Mirapex has been know to make that worse in MSA. Have they tried him on Sinemet (if he has the PD rigidity). Other meds MSA patients try are Amantadine and Baclofen. Actually some people here have tried every PD med going as well as MS meds and even Altzheimer's meds. Unfortunately there is no one medicine that helps everyone with MSA, so keep records and work with your doctors to find the best combination for your dad. Take care, Bill Werre Beck wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by VanderbiltUniv. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a littleover a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment frompartner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, stillgoing into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad'sdiagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an "older generation" drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said "get a referral and come on down" for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Cindy B.--You will find this group a wonderful source of help and advice and information. Everyone seems to progress (if you want to call it that) with the disease in different ways. My husband 78 can be in absolutely terrible shape at times and the next day will be smooth-sailing. We can never figure out why. I hope your father will have those respites too. They help a lot. Good luck. Lou R. At 12:44 AM 2/22/2002 -0500, you wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by Vanderbilt Univ. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a little over a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment from partner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, still going into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad's diagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an " older generation " drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said " get a referral and come on down " for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Cindy B.--You will find this group a wonderful source of help and advice and information. Everyone seems to progress (if you want to call it that) with the disease in different ways. My husband 78 can be in absolutely terrible shape at times and the next day will be smooth-sailing. We can never figure out why. I hope your father will have those respites too. They help a lot. Good luck. Lou R. At 12:44 AM 2/22/2002 -0500, you wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by Vanderbilt Univ. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a little over a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment from partner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, still going into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad's diagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an " older generation " drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said " get a referral and come on down " for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Cindy B.--You will find this group a wonderful source of help and advice and information. Everyone seems to progress (if you want to call it that) with the disease in different ways. My husband 78 can be in absolutely terrible shape at times and the next day will be smooth-sailing. We can never figure out why. I hope your father will have those respites too. They help a lot. Good luck. Lou R. At 12:44 AM 2/22/2002 -0500, you wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by Vanderbilt Univ. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a little over a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment from partner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, still going into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad's diagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an " older generation " drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said " get a referral and come on down " for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Cindy B. Baylor is a fine place to go, but there are closer places to you. The Cleveland Clinic in Cleveland Ohio is known for it's work with MSA also. Yes, stress can make the MSA symptoms worse. However the major thing that causes rapid deterioration is infection, so they should check him carefully for all types of infection (UTI, blood, pneumonia and yeast). The only SURE way of telling if he has MSA is autopsy, but that doesn't sound appropriate. There is no cure at this time for MSA, so care is restricted to treating the symptoms as well as possible. If your doctors are trying that, that is as good as you can do. Is he having any problems with confusion or memory? Mirapex has been know to make that worse in MSA. Have they tried him on Sinemet (if he has the PD rigidity). Other meds MSA patients try are Amantadine and Baclofen. Actually some people here have tried every PD med going as well as MS meds and even Altzheimer's meds. Unfortunately there is no one medicine that helps everyone with MSA, so keep records and work with your doctors to find the best combination for your dad. Take care, Bill Werre Beck wrote: Hello, I'm Cindy B. Have been reading along for several weeks, feel as though I know some of you. Was referred by VanderbiltUniv. to the group site for exchange of info. Am researching treatment to slow symptoms for my dad, age 72. We are only a littleover a year into having a diagnosis, first Parkinson's, now MSA. How can they be sure??? My mom is making adjustment frompartner to caregiver, and he gave up driving a year ago. Walks with cane, falls all the time. Speech is getting bad, is incontinent from prostate surgery 2 years ago that never healed, and has sleep apnea/cpap. Over a year ago he was still in suit and tie, stillgoing into the office. Does it always progress that quickly? My younger brother was diagnosed with cancer just before dad'sdiagnosis, (he is happily now in remission), and the stress seemed to accelerate dad's symtoms. My big concern is his medication, as general info reveals he has been prescribed an "older generation" drug, ARTANE. Also takes Mirapex. As he is not responding physically, and is declining, I am wondering if there are better, newer drugs that slow or improve the symptoms. Generally, what works???? (We are past denial, but still in phase of hope that something can help him have some quality of life for a while). Also, do any of you have experience with Baylor Univ. hospital in Texas? My internet research shows they appear to be on frontier of research for MSA, a phone call to them was optimistic, and they said "get a referral and come on down" for an evaluation. We are attempting to have his neuro in Pittsburgh do a phone consult on meds first. My mom would like a second opinion of his condition and treatment. Any suggestions or help would be greatly appreciated. If you do not wish to belong to shydrager, you may unsubscribe by sending a blank email to shydrager-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Welcome Cindy, though sorry you are here. My mother Joyce (died 11/5/00, 71) was first diagnosed with PD (many are) and within a year, rediagnosed with MSA. There is no way to be sure without an autopsy. In my mother's case, they came to this conclusion because she didn't get great benefit from the PD drugs, her symptoms progressed faster than with PD, and she showed both extrapyramidal (as with PD) and pyramidal (with Parkinson's Plus) signs. I don't know exactly what this means except to say that it indicated different areas of the brain being affected. She had many of the symptom you describe your dad as having--she also had a severe head/neck flex that curled her head into her chest. There was no pain, but it was her most disabling symptom. She fell all the time, slurred speech, slowness, some tremor. Her symptoms surfaced after being laid off after 14 years of work. (I am sorry about your brother but glad to hear he is in remission). Stress does make everything worse. My main reason for writing, apart from welcoming you, is to comment on the Artane. This was among the drug mix my mother was given (she tried many). She was on Artane for about a year when they weaned her off. She felt it helped with her balance (at first, at least), but later she was hallucinating a lot and feeling cloudy, etc. The neuro said that Artane is often not a good fit for older patients. This is not to say that your dad will develop such symptoms (which, by the way, can come from a lot of the drugs). However, when my mom was finally off the Artane, things in that department improved. Stay tuned. You have come to the right place. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Welcome Cindy, though sorry you are here. My mother Joyce (died 11/5/00, 71) was first diagnosed with PD (many are) and within a year, rediagnosed with MSA. There is no way to be sure without an autopsy. In my mother's case, they came to this conclusion because she didn't get great benefit from the PD drugs, her symptoms progressed faster than with PD, and she showed both extrapyramidal (as with PD) and pyramidal (with Parkinson's Plus) signs. I don't know exactly what this means except to say that it indicated different areas of the brain being affected. She had many of the symptom you describe your dad as having--she also had a severe head/neck flex that curled her head into her chest. There was no pain, but it was her most disabling symptom. She fell all the time, slurred speech, slowness, some tremor. Her symptoms surfaced after being laid off after 14 years of work. (I am sorry about your brother but glad to hear he is in remission). Stress does make everything worse. My main reason for writing, apart from welcoming you, is to comment on the Artane. This was among the drug mix my mother was given (she tried many). She was on Artane for about a year when they weaned her off. She felt it helped with her balance (at first, at least), but later she was hallucinating a lot and feeling cloudy, etc. The neuro said that Artane is often not a good fit for older patients. This is not to say that your dad will develop such symptoms (which, by the way, can come from a lot of the drugs). However, when my mom was finally off the Artane, things in that department improved. Stay tuned. You have come to the right place. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2002 Report Share Posted March 14, 2002 Welcome Cindy, though sorry you are here. My mother Joyce (died 11/5/00, 71) was first diagnosed with PD (many are) and within a year, rediagnosed with MSA. There is no way to be sure without an autopsy. In my mother's case, they came to this conclusion because she didn't get great benefit from the PD drugs, her symptoms progressed faster than with PD, and she showed both extrapyramidal (as with PD) and pyramidal (with Parkinson's Plus) signs. I don't know exactly what this means except to say that it indicated different areas of the brain being affected. She had many of the symptom you describe your dad as having--she also had a severe head/neck flex that curled her head into her chest. There was no pain, but it was her most disabling symptom. She fell all the time, slurred speech, slowness, some tremor. Her symptoms surfaced after being laid off after 14 years of work. (I am sorry about your brother but glad to hear he is in remission). Stress does make everything worse. My main reason for writing, apart from welcoming you, is to comment on the Artane. This was among the drug mix my mother was given (she tried many). She was on Artane for about a year when they weaned her off. She felt it helped with her balance (at first, at least), but later she was hallucinating a lot and feeling cloudy, etc. The neuro said that Artane is often not a good fit for older patients. This is not to say that your dad will develop such symptoms (which, by the way, can come from a lot of the drugs). However, when my mom was finally off the Artane, things in that department improved. Stay tuned. You have come to the right place. Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2002 Report Share Posted June 1, 2002 Hi Cindy My experience with fibromyalgia is that high doses of thyroid eliminated yrs of pain in about 2 wks.If you are mercury poisoned you cannot rely on labs for thyroid problems.You need to do the temp test. I used chlorella for about 6 months before I was made aware that it can make you worse which was my experience.I had days that I didn't dare get in my car to drive while I was on chlorella.It really made me depressed and felt like I had novocaine in my brain.Symptoms got much better after discontinuing the chlorella.It did help with intestinal candida but made other things worse.Don't do anything untill you educate your self.So many drs think they have the answer and they end up making you worse.Also DO NOT try to chelate mercury with anything till you have the amalgams out.You will end up with more mercury in your system. Chantal New to group Hi!< I am new to this group and looking for help and support in removing metals from my body. I have had hair analysis and urine provocation with DMSA. I was found to have mercury, aluminum and lead levels. I still have amalgams (5). I have been diagnosed with Fibromyalgia. I am seeing a Naturopathic Doc. who is starting me on Chlorella. Does anyone have info. on Chlorella to share? Any info. of all kinds would be appreciated. Thanks Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 > Hi!< > I am new to this group and looking for help and support in removing > metals from my body. I have had hair analysis and urine provocation > with DMSA. I was found to have mercury, aluminum and lead levels. > I still have amalgams (5). I have been diagnosed with > Fibromyalgia. I am seeing a Naturopathic Doc. who is starting me on > Chlorella. Does anyone have info. on Chlorella to share? Any info. > of all kinds would be appreciated. > Thanks > Cindy Hello Cindy, Yeah-- chlorella has been observed to have very negative effects on mercury toxic people. This is observed by both Andy Cutler and Hal Huggins. If you want to read Andy Cutler's comments, you can find a few on this topic (or any other topic!) here: http://groups.yahoo.com/group/Autism-Mercury/files/ANDY_INDEX I'm not sure which section the chlorella info will be in. Try either the " other chelation agents " section or the " sulfur and thiols " section. Or search the page for the word chlorella. Hal Huggins is the author of ITS ALL IN YOUR HEAD and pretty well known. He talks about chlorella in a small detox booklet he wrote. best wishes, Moria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 > Hi!< > I am new to this group and looking for help and support in removing > metals from my body. I have had hair analysis and urine provocation > with DMSA. I was found to have mercury, aluminum and lead levels. > I still have amalgams (5). I have been diagnosed with > Fibromyalgia. I am seeing a Naturopathic Doc. who is starting me on > Chlorella. Does anyone have info. on Chlorella to share? Yes. It is very dangerous, can't help, and should never be used. Your doctor needs to learn how to do detox properly instead of relying on unfounded superstitions even if they are popular among her colleagues. You might suggest she read Amalgam Illness: Diagnosis and Treatment (see www.noamalgam.com). > Any info. > of all kinds would be appreciated. > Thanks > Ci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 , Welcome to the list. Mom to Elliot 17mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2002 Report Share Posted July 18, 2002 , Welcome to the list. Mom to Elliot 17mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 , I'm so sorry you ended up with chronic pancreatitis. Do they have any idea what is causing the attacks? I wanted to welcome you to our group. Feel free to jump in the middle of posts, we all do that here. We're like a big family here. We have our occasional spats and arguments, but when things get touch, we all pull through. Please let us know if there is any we can do for you. Kimber -- Kimber Vallejo, CA hominid2@... Southwest Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2002 Report Share Posted August 14, 2002 , I'm so sorry you ended up with chronic pancreatitis. Do they have any idea what is causing the attacks? I wanted to welcome you to our group. Feel free to jump in the middle of posts, we all do that here. We're like a big family here. We have our occasional spats and arguments, but when things get touch, we all pull through. Please let us know if there is any we can do for you. Kimber -- Kimber Vallejo, CA hominid2@... Southwest Representative Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Thank you. No, they don't really know what has caused the latest round, something just aggravated the system I guess and I really can't figure out what it is as I don't drink and I really watch what I eat. Must be the air I guess. > , > I'm so sorry you ended up with chronic pancreatitis. Do they > have any idea what is causing the attacks? I wanted to > welcome you to our group. Feel free to jump in the middle of > posts, we all do that here. We're like a big family here. We > have our occasional spats and arguments, but when things get > touch, we all pull through. > Please let us know if there is any we can do for you. > Kimber > > -- > Kimber > Vallejo, CA > hominid2@c... > Southwest Representative > Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2002 Report Share Posted August 15, 2002 Thank you. No, they don't really know what has caused the latest round, something just aggravated the system I guess and I really can't figure out what it is as I don't drink and I really watch what I eat. Must be the air I guess. > , > I'm so sorry you ended up with chronic pancreatitis. Do they > have any idea what is causing the attacks? I wanted to > welcome you to our group. Feel free to jump in the middle of > posts, we all do that here. We're like a big family here. We > have our occasional spats and arguments, but when things get > touch, we all pull through. > Please let us know if there is any we can do for you. > Kimber > > -- > Kimber > Vallejo, CA > hominid2@c... > Southwest Representative > Pancreatitis Association, International Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 BLESS you & Welcome back!! It is great to hear how well all are doing. I am still hear. I am very busy work wise 7 doing a bunch of traveling in summer time. so am on here as often as I can. I am doing some quick posts as I can too. Love it that your back . LOVE & HUGS, GrandmomBEV New to group Hi everyone, Some of you I recognize, some not. Gram Bev, hi! I have taken a few year break from 'lists' etc. Time does not permit to read all the mail unless I stay up till the wee hours, which I love to do, but pay for in the morning! I could write an essay to introduce myself and my boys, but here's the short version. I have 2 sons. just turned 8 a couple of days ago. He was an invitro fertilization baby, conceived after 5 years of fertility treatment. He was born with meconium ilius and had surgery at 2 days old. He was diagnosed with cf at 2 1/2 months old. He is pretty healthy. He also had surgery at 1 1/2 years for problems with scar tissue from the first surgery. Another surgery at 2 1/2 years for a hydrocele (sort of like a hernia.) Another surgery at 7 years for polyps, which I see have been under discussion lately. His polyps also came back after just 6 months. I like some other parents here, do not wish to partake in surgery again, unless absolutely necessary. is seeing a Homeopathic M.D. at this time, and his polyps have shrunk. We are still working on it. I really like this doctor. My pulmonologist is leary, however trusts my judgement. also had a PICC line at that time of surgery 7yrs old for iv antiboitics at home. Wow was that an ordeal with a 2 year old also. We managed. So, to date the polyps are there, but not causing problems per se. wished and wished for a baby brother. Knowing how difficult it would be to have another baby, we applied for adoption. We had tried invitro 3 more times, and ended up delivering quadruplets at 15 weeks, two boys and two girls. That was devastating. After that, I had trouble having a pap smear. I was mentally and physically distraught. We finally applied for adoption, longing for another child to love and for a brother or sister for ! In 1999, (while I was on the Beatles tour in London nonetheless) Christian was born and his birthmother put him up for adoption! Yeah for us! We brought him into our home at 4 days old. What fun he has brought to our household........always cracking us up! He is 3 years old now and starts preschool tomorrow!!! Tomorrow!!!! started school today. My boys are growing. It is funny...... when everyone is well, things seem so 'normal' so to speak. The daily therapies, washing the nebulizer equipment, doling out pills and vitamins all seem so normal. I am happy. When someone gets ill, the rug is pulled out from under me and I need some heavy-duty antidepressants. Well, that is about all. My husband and I have been married 15 years and we are in Illinois. He travels frequently, which makes me feel like a single parent with a roof over my head. I'm glad to be back to listen and comment here and there, although I may not be able to read all the mail at times. When I was part of the Cystic-L when was 2, it was a lifesaver to know that I was not alone. I like to be able to help with health issues. See you all around. Cheri, Mom to , 8yrs, ivf baby w/cf and Christian, 3yrs, adopted, both gifts from Heaven!!! ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 BLESS you & Welcome back!! It is great to hear how well all are doing. I am still hear. I am very busy work wise 7 doing a bunch of traveling in summer time. so am on here as often as I can. I am doing some quick posts as I can too. Love it that your back . LOVE & HUGS, GrandmomBEV New to group Hi everyone, Some of you I recognize, some not. Gram Bev, hi! I have taken a few year break from 'lists' etc. Time does not permit to read all the mail unless I stay up till the wee hours, which I love to do, but pay for in the morning! I could write an essay to introduce myself and my boys, but here's the short version. I have 2 sons. just turned 8 a couple of days ago. He was an invitro fertilization baby, conceived after 5 years of fertility treatment. He was born with meconium ilius and had surgery at 2 days old. He was diagnosed with cf at 2 1/2 months old. He is pretty healthy. He also had surgery at 1 1/2 years for problems with scar tissue from the first surgery. Another surgery at 2 1/2 years for a hydrocele (sort of like a hernia.) Another surgery at 7 years for polyps, which I see have been under discussion lately. His polyps also came back after just 6 months. I like some other parents here, do not wish to partake in surgery again, unless absolutely necessary. is seeing a Homeopathic M.D. at this time, and his polyps have shrunk. We are still working on it. I really like this doctor. My pulmonologist is leary, however trusts my judgement. also had a PICC line at that time of surgery 7yrs old for iv antiboitics at home. Wow was that an ordeal with a 2 year old also. We managed. So, to date the polyps are there, but not causing problems per se. wished and wished for a baby brother. Knowing how difficult it would be to have another baby, we applied for adoption. We had tried invitro 3 more times, and ended up delivering quadruplets at 15 weeks, two boys and two girls. That was devastating. After that, I had trouble having a pap smear. I was mentally and physically distraught. We finally applied for adoption, longing for another child to love and for a brother or sister for ! In 1999, (while I was on the Beatles tour in London nonetheless) Christian was born and his birthmother put him up for adoption! Yeah for us! We brought him into our home at 4 days old. What fun he has brought to our household........always cracking us up! He is 3 years old now and starts preschool tomorrow!!! Tomorrow!!!! started school today. My boys are growing. It is funny...... when everyone is well, things seem so 'normal' so to speak. The daily therapies, washing the nebulizer equipment, doling out pills and vitamins all seem so normal. I am happy. When someone gets ill, the rug is pulled out from under me and I need some heavy-duty antidepressants. Well, that is about all. My husband and I have been married 15 years and we are in Illinois. He travels frequently, which makes me feel like a single parent with a roof over my head. I'm glad to be back to listen and comment here and there, although I may not be able to read all the mail at times. When I was part of the Cystic-L when was 2, it was a lifesaver to know that I was not alone. I like to be able to help with health issues. See you all around. Cheri, Mom to , 8yrs, ivf baby w/cf and Christian, 3yrs, adopted, both gifts from Heaven!!! ------------------------------------------- Introducing NetZero Long Distance Unlimited Long Distance only $29.95/ month! Sign Up Today! www.netzerolongdistance.com PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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