Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 I have not yet been diagnosed with anything, but my mother sent me an article about MSA because my symptoms seem very disturbingly similar. I am 36, female, diabetic (2 years), and in May of this year started having dizzy and fainting spells. What has been happening: 1) The right side of my face droops sometimes and I have tingling (spidery) sensations when it does. Sometimes is swells a little. When it is real bad, I cannot see out of my right eye. 2) If I lay on my left side my arm and leg go to sleep. If I lay on my right side I don't have as much trouble. I snore like you would not believe and have all my life. 3) I can be doing fine and all of the sudden I get so dizzy and lightheaded that I fall or faint. When I faint, it sometimes takes several minutes for me to come around and be responsive. Sometimes my legs go weak and I fall. 4) Sometimes I get a sharp pain in my head that is so strong it sends me reeling - my legs collapse underneath me. It only lasts for a minute or two, but is overpowering. Usually this happens only when I am standing, but I have had overwhelming dizzy spells when I am sitting. 5) I get weak after very little exertion and have to lay down. 6) After working a full day and driving home (no one has told me not to drive yet) I am so exhausted, I can barely get to bed. 7) I have to get up to go to the bathroom at least five to six times a night. 8) My memory has deteriorated significantly. Some days it is good, on other days, though I would lose my head if it weren't attached. 9) I cry at the least little thing, even when I have no reason. I don't believe it is PMS because I had a hysterectomy 10 years ago and it is not related to any specific time of the month. 10) My neck is so painful sometimes I feel like I can't hold up my head and I have to rest it on my hand or put my head on my desk. 11) If I am reading something aloud or having a conversation, my voice will hold out for maybe 5 - 10 minutes before I begin to feel hoarse, and my throat hurts like I have strained my voice. 12) I choke at least once a meal because I have difficulty swallowing, especially if I am not feeling well. 13) I get pneumonia very easily. I have asthma and had mycoplasmic pneumonia for six months last year. My mother and her sister both have Parkinson's. They both have apnea and use CPAP (as do three of my four brothers). My maternal grandmother had it, too. My maternal grandfather had some form of apnea where he would make a strange high pitch noise and had to be physically moved to make him come around. I understand MSA is not considered genetic, but it's closeness to Parkinson's has me worried. I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, and one hospital stay with continuous telemetry and still no diagnosis. I just went to see an endocronologist and he gave me ACTH to test my cortisol levels. They were fine and he wants me to come back in a month. What questions should I ask him? What tests should I request? Please help me!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Donna, Hi and welcome to the list. We (most of us, anyway) are not doctors, but patients and caregivers. Collectively we do have a great deal of knowledge about MSA, but we can't make a diagnosis. Having said that, I would suggest that you take the list of symptoms you have here to your doctor. It does sound like you may have some form of dysautonomia (problems with the autonomic nervous system) so your endocrinologist may refer you to an autonomic specialist. There are some types of autonomic problems associated with diabetes, so your endocrinologist may be familiar with them. Ask him if he feels you should have autonomic testing. Tell him what you are concerned about and let him respond. Be careful about self diagnosing. Please do let us know how you make out. Carol & Rob Lexington, MA What is wrong with me? > I have not yet been diagnosed with anything, but my mother sent me an > article about MSA because my symptoms seem very disturbingly similar. > > I am 36, female, diabetic (2 years), and in May of this year started > having dizzy and fainting spells. > > What has been happening: > > 1) The right side of my face droops sometimes and I have tingling > (spidery) sensations when it does. Sometimes is swells a little. > When it is real bad, I cannot see out of my right eye. > 2) If I lay on my left side my arm and leg go to sleep. If I lay on > my right side I don't have as much trouble. I snore like you would > not believe and have all my life. > 3) I can be doing fine and all of the sudden I get so dizzy and > lightheaded that I fall or faint. When I faint, it sometimes takes > several minutes for me to come around and be responsive. Sometimes > my legs go weak and I fall. > 4) Sometimes I get a sharp pain in my head that is so strong it > sends me reeling - my legs collapse underneath me. It only lasts for > a minute or two, but is overpowering. Usually this happens only when > I am standing, but I have had overwhelming dizzy spells when I am > sitting. > 5) I get weak after very little exertion and have to lay down. > 6) After working a full day and driving home (no one has told me not > to drive yet) I am so exhausted, I can barely get to bed. > 7) I have to get up to go to the bathroom at least five to six times > a night. > 8) My memory has deteriorated significantly. Some days it is good, > on other days, though I would lose my head if it weren't attached. > 9) I cry at the least little thing, even when I have no reason. I > don't believe it is PMS because I had a hysterectomy 10 years ago and > it is not related to any specific time of the month. > 10) My neck is so painful sometimes I feel like I can't hold up my > head and I have to rest it on my hand or put my head on my desk. > 11) If I am reading something aloud or having a conversation, my > voice will hold out for maybe 5 - 10 minutes before I begin to feel > hoarse, and my throat hurts like I have strained my voice. > 12) I choke at least once a meal because I have difficulty > swallowing, especially if I am not feeling well. > 13) I get pneumonia very easily. I have asthma and had mycoplasmic > pneumonia for six months last year. > > My mother and her sister both have Parkinson's. They both have apnea > and use CPAP (as do three of my four brothers). My maternal > grandmother had it, too. My maternal grandfather had some form of > apnea where he would make a strange high pitch noise and had to be > physically moved to make him come around. > > I understand MSA is not considered genetic, but it's closeness to > Parkinson's has me worried. > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > and one hospital stay with continuous telemetry and still no > diagnosis. > > I just went to see an endocronologist and he gave me ACTH to test my > cortisol levels. They were fine and he wants me to come back in a > month. > > What questions should I ask him? > What tests should I request? > > Please help me!!!!! > > > 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 September 1, 2002 Report Share Posted September 1, 2002 Thank you. I have no desire to self-diagnose. I do not have the background. It is just when my Mom sent me this article, I got really concerned. I knew you all had been through this and that is why I was asking for advice. If it sounds like something you have dealt with, then I want to know. At least with some knowledge I can ask the right questions. I would rather get the answers than wonder and worry. My endocronologist is just delving into this. My neurologist is ready to write it all off as migraine (and I am about ready to write him off, too). I have had migraines all my life and this is nothing like any migraine I have ever had. I will ask about the autonomic testing. Is that the same as a tilt table test? I had read about that in the attempt to diagnose orthostatic hypotension. (The endocronologist gave me Florinef and I was looking into what it does.) Thanks again for the guidance. Donna > Donna, > > Hi and welcome to the list. We (most of us, anyway) are not doctors, but > patients and caregivers. Collectively we do have a great deal of knowledge > about MSA, but we can't make a diagnosis. Having said that, I would suggest > that you take the list of symptoms you have here to your doctor. It does > sound like you may have some form of dysautonomia (problems with the > autonomic nervous system) so your endocrinologist may refer you to an > autonomic specialist. There are some types of autonomic problems associated > with diabetes, so your endocrinologist may be familiar with them. Ask him > if he feels you should have autonomic testing. Tell him what you are > concerned about and let him respond. Be careful about self diagnosing. > > Please do let us know how you make out. > > Carol & Rob > Lexington, MA > > What is wrong with me? > > > > I have not yet been diagnosed with anything, but my mother sent me an > > article about MSA because my symptoms seem very disturbingly similar. > > > > I am 36, female, diabetic (2 years), and in May of this year started > > having dizzy and fainting spells. > > > > What has been happening: > > > > 1) The right side of my face droops sometimes and I have tingling > > (spidery) sensations when it does. Sometimes is swells a little. > > When it is real bad, I cannot see out of my right eye. > > 2) If I lay on my left side my arm and leg go to sleep. If I lay on > > my right side I don't have as much trouble. I snore like you would > > not believe and have all my life. > > 3) I can be doing fine and all of the sudden I get so dizzy and > > lightheaded that I fall or faint. When I faint, it sometimes takes > > several minutes for me to come around and be responsive. Sometimes > > my legs go weak and I fall. > > 4) Sometimes I get a sharp pain in my head that is so strong it > > sends me reeling - my legs collapse underneath me. It only lasts for > > a minute or two, but is overpowering. Usually this happens only when > > I am standing, but I have had overwhelming dizzy spells when I am > > sitting. > > 5) I get weak after very little exertion and have to lay down. > > 6) After working a full day and driving home (no one has told me not > > to drive yet) I am so exhausted, I can barely get to bed. > > 7) I have to get up to go to the bathroom at least five to six times > > a night. > > 8) My memory has deteriorated significantly. Some days it is good, > > on other days, though I would lose my head if it weren't attached. > > 9) I cry at the least little thing, even when I have no reason. I > > don't believe it is PMS because I had a hysterectomy 10 years ago and > > it is not related to any specific time of the month. > > 10) My neck is so painful sometimes I feel like I can't hold up my > > head and I have to rest it on my hand or put my head on my desk. > > 11) If I am reading something aloud or having a conversation, my > > voice will hold out for maybe 5 - 10 minutes before I begin to feel > > hoarse, and my throat hurts like I have strained my voice. > > 12) I choke at least once a meal because I have difficulty > > swallowing, especially if I am not feeling well. > > 13) I get pneumonia very easily. I have asthma and had mycoplasmic > > pneumonia for six months last year. > > > > My mother and her sister both have Parkinson's. They both have apnea > > and use CPAP (as do three of my four brothers). My maternal > > grandmother had it, too. My maternal grandfather had some form of > > apnea where he would make a strange high pitch noise and had to be > > physically moved to make him come around. > > > > I understand MSA is not considered genetic, but it's closeness to > > Parkinson's has me worried. > > > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > > and one hospital stay with continuous telemetry and still no > > diagnosis. > > > > I just went to see an endocronologist and he gave me ACTH to test my > > cortisol levels. They were fine and he wants me to come back in a > > month. > > > > What questions should I ask him? > > What tests should I request? > > > > Please help me!!!!! > > > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2002 Report Share Posted September 1, 2002 Donna, I agree with Carol Langer who is very wise, but I must remind you that many of the symptoms you describe may also be symptoms of diabetes. I am a Type II diabetic which began in 1994. The doctors think the diabetes may have been triggered from too much cortisone used in attempts to cure 10 years of chronic sinus infections and " drive you crazy " caoughs. Finally, after 2 different surgeries on the sinus cavities they discovered a chronic staff infection in some impacted sinuses was causing the problem. Even so, I am now diabetic. My weight does not help the situation either. Back to your symptoms. I went to a week training class at a hospital in Nashville when I was first diagnosed. Some of the information gained there tells me that many of your symptoms sound like diabetes. I have had a few of them myself. You may need to find a neww endocrinologist who is willing to assist you in education of the diabetes problem. Best wishes to you, Mailyn in TN > > Reply-To: shydrager > Date: Sun, 01 Sep 2002 21:00:24 -0000 > To: shydrager > Subject: What is wrong with me? > > I have not yet been diagnosed with anything, but my mother sent me an > article about MSA because my symptoms seem very disturbingly similar. > > I am 36, female, diabetic (2 years), and in May of this year started > having dizzy and fainting spells. > > What has been happening: > > 1) The right side of my face droops sometimes and I have tingling > (spidery) sensations when it does. Sometimes is swells a little. > When it is real bad, I cannot see out of my right eye. > 2) If I lay on my left side my arm and leg go to sleep. If I lay on > my right side I don't have as much trouble. I snore like you would > not believe and have all my life. > 3) I can be doing fine and all of the sudden I get so dizzy and > lightheaded that I fall or faint. When I faint, it sometimes takes > several minutes for me to come around and be responsive. Sometimes > my legs go weak and I fall. > 4) Sometimes I get a sharp pain in my head that is so strong it > sends me reeling - my legs collapse underneath me. It only lasts for > a minute or two, but is overpowering. Usually this happens only when > I am standing, but I have had overwhelming dizzy spells when I am > sitting. > 5) I get weak after very little exertion and have to lay down. > 6) After working a full day and driving home (no one has told me not > to drive yet) I am so exhausted, I can barely get to bed. > 7) I have to get up to go to the bathroom at least five to six times > a night. > 8) My memory has deteriorated significantly. Some days it is good, > on other days, though I would lose my head if it weren't attached. > 9) I cry at the least little thing, even when I have no reason. I > don't believe it is PMS because I had a hysterectomy 10 years ago and > it is not related to any specific time of the month. > 10) My neck is so painful sometimes I feel like I can't hold up my > head and I have to rest it on my hand or put my head on my desk. > 11) If I am reading something aloud or having a conversation, my > voice will hold out for maybe 5 - 10 minutes before I begin to feel > hoarse, and my throat hurts like I have strained my voice. > 12) I choke at least once a meal because I have difficulty > swallowing, especially if I am not feeling well. > 13) I get pneumonia very easily. I have asthma and had mycoplasmic > pneumonia for six months last year. > > My mother and her sister both have Parkinson's. They both have apnea > and use CPAP (as do three of my four brothers). My maternal > grandmother had it, too. My maternal grandfather had some form of > apnea where he would make a strange high pitch noise and had to be > physically moved to make him come around. > > I understand MSA is not considered genetic, but it's closeness to > Parkinson's has me worried. > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > and one hospital stay with continuous telemetry and still no > diagnosis. > > I just went to see an endocronologist and he gave me ACTH to test my > cortisol levels. They were fine and he wants me to come back in a > month. > > What questions should I ask him? > What tests should I request? > > Please help me!!!!! > > > 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 September 2, 2002 Report Share Posted September 2, 2002 Donna, Don't be too quick to accept a diagnoses when you get one. There are many things it could be including Chiari which is a malformation of the spine. It can form a cyst on the spinal cord and cause symptoms similar to what you are experiencing. There is an operation which can help many people with this problem, but it is risky. You should also ask about the possibility of some sort of infection. People with brain disorders are prone to infection. Infection can make any brain malfunction much worse and aggravate symptoms. Take care, Bill Werre ===================== > > > Date: 2002/09/01 Sun PM 09:37:19 CDT > To: shydrager > Subject: Re: What is wrong with me? > > Thank you. I have no desire to self-diagnose. I do not have the > background. It is just when my Mom sent me this article, I got > really concerned. > > I knew you all had been through this and that is why I was asking for > advice. If it sounds like something you have dealt with, then I want > to know. At least with some knowledge I can ask the right > questions. I would rather get the answers than wonder and worry. > > My endocronologist is just delving into this. My neurologist is > ready to write it all off as migraine (and I am about ready to write > him off, too). I have had migraines all my life and this is nothing > like any migraine I have ever had. > > I will ask about the autonomic testing. Is that the same as a tilt > table test? I had read about that in the attempt to diagnose > orthostatic hypotension. (The endocronologist gave me Florinef and I > was looking into what it does.) > > Thanks again for the guidance. > > Donna > > > > Donna, > > > > Hi and welcome to the list. We (most of us, anyway) are not > doctors, but > > patients and caregivers. Collectively we do have a great deal of > knowledge > > about MSA, but we can't make a diagnosis. Having said that, I > would suggest > > that you take the list of symptoms you have here to your doctor. > It does > > sound like you may have some form of dysautonomia (problems with the > > autonomic nervous system) so your endocrinologist may refer you to > an > > autonomic specialist. There are some types of autonomic problems > associated > > with diabetes, so your endocrinologist may be familiar with them. > Ask him > > if he feels you should have autonomic testing. Tell him what you > are > > concerned about and let him respond. Be careful about self > diagnosing. > > > > Please do let us know how you make out. > > > > Carol & Rob > > Lexington, MA > > > > What is wrong with me? > > > > > > > I have not yet been diagnosed with anything, but my mother sent > me an > > > article about MSA because my symptoms seem very disturbingly > similar. > > > > > > I am 36, female, diabetic (2 years), and in May of this year > started > > > having dizzy and fainting spells. > > > > > > What has been happening: > > > > > > 1) The right side of my face droops sometimes and I have tingling > > > (spidery) sensations when it does. Sometimes is swells a little. > > > When it is real bad, I cannot see out of my right eye. > > > 2) If I lay on my left side my arm and leg go to sleep. If I > lay on > > > my right side I don't have as much trouble. I snore like you > would > > > not believe and have all my life. > > > 3) I can be doing fine and all of the sudden I get so dizzy and > > > lightheaded that I fall or faint. When I faint, it sometimes > takes > > > several minutes for me to come around and be responsive. > Sometimes > > > my legs go weak and I fall. > > > 4) Sometimes I get a sharp pain in my head that is so strong it > > > sends me reeling - my legs collapse underneath me. It only lasts > for > > > a minute or two, but is overpowering. Usually this happens only > when > > > I am standing, but I have had overwhelming dizzy spells when I am > > > sitting. > > > 5) I get weak after very little exertion and have to lay down. > > > 6) After working a full day and driving home (no one has told me > not > > > to drive yet) I am so exhausted, I can barely get to bed. > > > 7) I have to get up to go to the bathroom at least five to six > times > > > a night. > > > 8) My memory has deteriorated significantly. Some days it is > good, > > > on other days, though I would lose my head if it weren't attached. > > > 9) I cry at the least little thing, even when I have no reason. > I > > > don't believe it is PMS because I had a hysterectomy 10 years ago > and > > > it is not related to any specific time of the month. > > > 10) My neck is so painful sometimes I feel like I can't hold up my > > > head and I have to rest it on my hand or put my head on my desk. > > > 11) If I am reading something aloud or having a conversation, my > > > voice will hold out for maybe 5 - 10 minutes before I begin to > feel > > > hoarse, and my throat hurts like I have strained my voice. > > > 12) I choke at least once a meal because I have difficulty > > > swallowing, especially if I am not feeling well. > > > 13) I get pneumonia very easily. I have asthma and had > mycoplasmic > > > pneumonia for six months last year. > > > > > > My mother and her sister both have Parkinson's. They both have > apnea > > > and use CPAP (as do three of my four brothers). My maternal > > > grandmother had it, too. My maternal grandfather had some form of > > > apnea where he would make a strange high pitch noise and had to be > > > physically moved to make him come around. > > > > > > I understand MSA is not considered genetic, but it's closeness to > > > Parkinson's has me worried. > > > > > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > > > and one hospital stay with continuous telemetry and still no > > > diagnosis. > > > > > > I just went to see an endocronologist and he gave me ACTH to test > my > > > cortisol levels. They were fine and he wants me to come back in a > > > month. > > > > > > What questions should I ask him? > > > What tests should I request? > > > > > > Please help me!!!!! > > > > > > > > > If you do not wish to belong to shydrager, you may > > > unsubscribe by sending a blank email to > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Donna, I just re-read my post to you and it sounded a little harsh -- please excuse me if it came across that way to you. I was trying to reassure you that although you may have some aspects of MSA there are other things that might be causing your problems (such as your diabetes) and I don't want you to be too worried. Autonomic testing usually includes a tilt table test. If you go to the main yahoo site and look under " doctors " in the " 'links " section there is a folder about tests for autonomic dysfunction -- http://groups.yahoo.com/group/shydrager/links/Doctors_who_treat_MS_000965832 140/Disorders_Similar_to_000966460046/Diagnostic_Tests_000989757631/ There is a complete explanation of what autonomic tests include. Not all tests will be conducted by all doctors, so just use it for educating yourself. Florinef is used by many patients with orthostatic hypotension to raise blood pressure. It acts by increasing the blood volume, which it does by pulling more water into the blood stream. To get the maximum impact from florinef you must drink lots of water ( 2 liters a day) and either use salt liberally, drink bouillon or take buffered salt tablets. Please ask more questions as they come up -- and I hope you DON'T have MSA! Carol & Rob Lexington, MA What is wrong with me? > > > > > > > I have not yet been diagnosed with anything, but my mother sent > me an > > > article about MSA because my symptoms seem very disturbingly > similar. > > > > > > I am 36, female, diabetic (2 years), and in May of this year > started > > > having dizzy and fainting spells. > > > > > > What has been happening: > > > > > > 1) The right side of my face droops sometimes and I have tingling > > > (spidery) sensations when it does. Sometimes is swells a little. > > > When it is real bad, I cannot see out of my right eye. > > > 2) If I lay on my left side my arm and leg go to sleep. If I > lay on > > > my right side I don't have as much trouble. I snore like you > would > > > not believe and have all my life. > > > 3) I can be doing fine and all of the sudden I get so dizzy and > > > lightheaded that I fall or faint. When I faint, it sometimes > takes > > > several minutes for me to come around and be responsive. > Sometimes > > > my legs go weak and I fall. > > > 4) Sometimes I get a sharp pain in my head that is so strong it > > > sends me reeling - my legs collapse underneath me. It only lasts > for > > > a minute or two, but is overpowering. Usually this happens only > when > > > I am standing, but I have had overwhelming dizzy spells when I am > > > sitting. > > > 5) I get weak after very little exertion and have to lay down. > > > 6) After working a full day and driving home (no one has told me > not > > > to drive yet) I am so exhausted, I can barely get to bed. > > > 7) I have to get up to go to the bathroom at least five to six > times > > > a night. > > > 8) My memory has deteriorated significantly. Some days it is > good, > > > on other days, though I would lose my head if it weren't attached. > > > 9) I cry at the least little thing, even when I have no reason. > I > > > don't believe it is PMS because I had a hysterectomy 10 years ago > and > > > it is not related to any specific time of the month. > > > 10) My neck is so painful sometimes I feel like I can't hold up my > > > head and I have to rest it on my hand or put my head on my desk. > > > 11) If I am reading something aloud or having a conversation, my > > > voice will hold out for maybe 5 - 10 minutes before I begin to > feel > > > hoarse, and my throat hurts like I have strained my voice. > > > 12) I choke at least once a meal because I have difficulty > > > swallowing, especially if I am not feeling well. > > > 13) I get pneumonia very easily. I have asthma and had > mycoplasmic > > > pneumonia for six months last year. > > > > > > My mother and her sister both have Parkinson's. They both have > apnea > > > and use CPAP (as do three of my four brothers). My maternal > > > grandmother had it, too. My maternal grandfather had some form of > > > apnea where he would make a strange high pitch noise and had to be > > > physically moved to make him come around. > > > > > > I understand MSA is not considered genetic, but it's closeness to > > > Parkinson's has me worried. > > > > > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > > > and one hospital stay with continuous telemetry and still no > > > diagnosis. > > > > > > I just went to see an endocronologist and he gave me ACTH to test > my > > > cortisol levels. They were fine and he wants me to come back in a > > > month. > > > > > > What questions should I ask him? > > > What tests should I request? > > > > > > Please help me!!!!! > > > > > > > > > If you do not wish to belong to shydrager, you may > > > unsubscribe by sending a blank email to > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 Bill -- Have you run across any studies re correlation between spine malformations/lesions and MSA-type symptoms? Or, for that matter, any reports of spinal abnormalities as resulting from MSA? Tony -- In shydrager@y..., wrote: > > Donna, > > Don't be too quick to accept a diagnoses when you get one. There are many things it could be including Chiari which is a malformation of the spine. It can form a cyst on the spinal cord and cause symptoms similar to what you are experiencing. There is an operation which can help many people with this problem, but it is risky. > > You should also ask about the possibility of some sort of infection. People with brain disorders are prone to infection. Infection can make any brain malfunction much worse and aggravate symptoms. > > Take care, Bill Werre > > ===================== > > > > From: " donnamixon " > > Date: 2002/09/01 Sun PM 09:37:19 CDT > > To: shydrager@y... > > Subject: Re: What is wrong with me? > > > > Thank you. I have no desire to self-diagnose. I do not have the > > background. It is just when my Mom sent me this article, I got > > really concerned. > > > > I knew you all had been through this and that is why I was asking for > > advice. If it sounds like something you have dealt with, then I want > > to know. At least with some knowledge I can ask the right > > questions. I would rather get the answers than wonder and worry. > > > > My endocronologist is just delving into this. My neurologist is > > ready to write it all off as migraine (and I am about ready to write > > him off, too). I have had migraines all my life and this is nothing > > like any migraine I have ever had. > > > > I will ask about the autonomic testing. Is that the same as a tilt > > table test? I had read about that in the attempt to diagnose > > orthostatic hypotension. (The endocronologist gave me Florinef and I > > was looking into what it does.) > > > > Thanks again for the guidance. > > > > Donna > > > > > > > Donna, > > > > > > Hi and welcome to the list. We (most of us, anyway) are not > > doctors, but > > > patients and caregivers. Collectively we do have a great deal of > > knowledge > > > about MSA, but we can't make a diagnosis. Having said that, I > > would suggest > > > that you take the list of symptoms you have here to your doctor. > > It does > > > sound like you may have some form of dysautonomia (problems with the > > > autonomic nervous system) so your endocrinologist may refer you to > > an > > > autonomic specialist. There are some types of autonomic problems > > associated > > > with diabetes, so your endocrinologist may be familiar with them. > > Ask him > > > if he feels you should have autonomic testing. Tell him what you > > are > > > concerned about and let him respond. Be careful about self > > diagnosing. > > > > > > Please do let us know how you make out. > > > > > > Carol & Rob > > > Lexington, MA > > > > > > What is wrong with me? > > > > > > > > > > I have not yet been diagnosed with anything, but my mother sent > > me an > > > > article about MSA because my symptoms seem very disturbingly > > similar. > > > > > > > > I am 36, female, diabetic (2 years), and in May of this year > > started > > > > having dizzy and fainting spells. > > > > > > > > What has been happening: > > > > > > > > 1) The right side of my face droops sometimes and I have tingling > > > > (spidery) sensations when it does. Sometimes is swells a little. > > > > When it is real bad, I cannot see out of my right eye. > > > > 2) If I lay on my left side my arm and leg go to sleep. If I > > lay on > > > > my right side I don't have as much trouble. I snore like you > > would > > > > not believe and have all my life. > > > > 3) I can be doing fine and all of the sudden I get so dizzy and > > > > lightheaded that I fall or faint. When I faint, it sometimes > > takes > > > > several minutes for me to come around and be responsive. > > Sometimes > > > > my legs go weak and I fall. > > > > 4) Sometimes I get a sharp pain in my head that is so strong it > > > > sends me reeling - my legs collapse underneath me. It only lasts > > for > > > > a minute or two, but is overpowering. Usually this happens only > > when > > > > I am standing, but I have had overwhelming dizzy spells when I am > > > > sitting. > > > > 5) I get weak after very little exertion and have to lay down. > > > > 6) After working a full day and driving home (no one has told me > > not > > > > to drive yet) I am so exhausted, I can barely get to bed. > > > > 7) I have to get up to go to the bathroom at least five to six > > times > > > > a night. > > > > 8) My memory has deteriorated significantly. Some days it is > > good, > > > > on other days, though I would lose my head if it weren't attached. > > > > 9) I cry at the least little thing, even when I have no reason. > > I > > > > don't believe it is PMS because I had a hysterectomy 10 years ago > > and > > > > it is not related to any specific time of the month. > > > > 10) My neck is so painful sometimes I feel like I can't hold up my > > > > head and I have to rest it on my hand or put my head on my desk. > > > > 11) If I am reading something aloud or having a conversation, my > > > > voice will hold out for maybe 5 - 10 minutes before I begin to > > feel > > > > hoarse, and my throat hurts like I have strained my voice. > > > > 12) I choke at least once a meal because I have difficulty > > > > swallowing, especially if I am not feeling well. > > > > 13) I get pneumonia very easily. I have asthma and had > > mycoplasmic > > > > pneumonia for six months last year. > > > > > > > > My mother and her sister both have Parkinson's. They both have > > apnea > > > > and use CPAP (as do three of my four brothers). My maternal > > > > grandmother had it, too. My maternal grandfather had some form of > > > > apnea where he would make a strange high pitch noise and had to be > > > > physically moved to make him come around. > > > > > > > > I understand MSA is not considered genetic, but it's closeness to > > > > Parkinson's has me worried. > > > > > > > > I have had four MRIs, two MRAs, three CTs, a 24-hr Holter Monitor, > > > > and one hospital stay with continuous telemetry and still no > > > > diagnosis. > > > > > > > > I just went to see an endocronologist and he gave me ACTH to test > > my > > > > cortisol levels. They were fine and he wants me to come back in a > > > > month. > > > > > > > > What questions should I ask him? > > > > What tests should I request? > > > > > > > > Please help me!!!!! > > > > > > > > > > > > If you do not wish to belong to shydrager, you may > > > > unsubscribe by sending a blank email to > > > > > > > > shydrager-unsubscribe@y... > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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