Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 You need a neurologist who understand neuro degenerative processes ASAP. Let the list know where you live as there are folks here who can identify such a specialist in your area hopefully. Your symptoms seem to be classic MSA, but we are not MDs. Get good professional help immediately. Take your list of symptoms to your first appointment. They are well written. Message: 13 Date: Sun, 01 Sep 2002 21:00:24 -0000 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!!!!! Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2002 Report Share Posted September 2, 2002 maybe i missed it , but where are u getting ur autonomic testing done?? and... what test are going to be done?? nancy Carol Langer wrote: > > 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 Tony, No to all. I just notice that symptoms of Chiari - syrinx and MSA are similar. Over the past 3 years I have seen a few people who thought MSA and ended up as Chiari. The symptoms usually come from the cyst which forms due to the Chiari. Chiari is fairly easy to diagnose with a MRI of the brain stem/upper spine area. My daughter's doctors caught it within weeks, but took months before deciding not to operate (and one of three wanted to operate). The Chiari itself is a birth defect, so symptoms are brough on by the cyst. It is not caused by MSA, but could be caused by the same gene which causes the MSA - who knows? Take care, Bill Werre ============================ swartzlloyd2 wrote: 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..., <b.werre@v...> 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" <donnamixon@y...>Date: 2002/09/01 Sun PM 09:37:19 CDTTo: 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 & RobLexington, 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 difficultyswallowing, 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 maternalgrandmother 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 nodiagnosis.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 mayunsubscribe by sending a blank email toshydrager-unsubscribe@y... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Hi Donna. Autonomic testing can be very involved. My testing did not involve the tilt-table until Mayo. There is an Auditory Brain Stem Response test. That test is used to check for neurological problems related to hearing. It is cool because it is painless, and all you have to do is lay there :-) That was the first hint my docs had that there were underlying neurological problems. In fact, my ENT looked at the results, and at my MRI - and said that it was probably autonomic neuropathy as my MRI showed no signs of problems with narrow nerve channels or of lesions on my brain (contrary to the actual neuro test). Problems with many of these tests, is that you can throw normal test results. For example, one test showed significant abnormalities at one hopsital in Tulsa. That was outpatient. Then, when inpatient at another, the results were not nearly as significant. However, when out of the hospital, my neuro was able to find reflex on my body - but when hospitalized - I had a total absence of reflex (then the next day they were back a bit - then gone again the next day). When it came to more testing, my ENT did not expect them to find anything out at Mayo. I am pleased he was wrong, but glad that he prepped me (because others have had test results come out " normal " - only to still have the symptoms). I also had nerve conduction tests designed to check the myelin sheath - which will help in ruling out MS or similar diseases. I also had visual stimulation tests. And there are also sweat tests - where they induce sweating (which was another way they knew I had problems). A good neuro can run some simple sensory tests of his own - without fancy testing equipment, and give you some hints. My preliminary diagnosis from my neuro was " hit and miss neuropathy " - officially termed " polyneuropathy " . That was back when we just thought the neuro stuff was a symptom of something else (not knowing the neuro stuff was the cause of everything :-). Anyway, this is a very involved process. The electrical nerve stimulation stuff hurts sometimes - for some of us - and not for others (kinda like bone marrow tests I guess - the guy before me on the day I had mine had a " double " and said it didn't hurt him at all - but mine was excruciating!) Hope this helps. As I said in email to you... there are many possibilities. Let the docs do their job. But... if they don't - then don't hesitate to advocate for yourself. In my case - it was the only way anything got done, and still seems to be that way. In fact, seems that now that they know what it is... and that there is nothing they can do... they've all but forgotten about me. That is where support groups are very important. When you find out what indeed you do have. Find a good support group, and get plugged in. Out here in Okieville - there isn't much of any kind of support - even in Tulsa. But there is always the internet :-) Please keep in touch, and drop us a line when you find out more of what is causing your problems. You may find that even if you have a problem that is not techinically MSA - that you can relate better to us. If that's the case - then by all means - come visit :-) I'm sure no one is going to chase you away :-) But, you may find much better information - tied more to exactly what you're going through - on a diabetes site. Certainly not going to push you away though - because I doubt there's anyone here who would say that just because you have one disease - you can't have another :- ) Adios for now. Pablito > > 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 3, 2002 Report Share Posted September 3, 2002 Tony, The E-Mail address I am giving you is a man who happens to have a wealth of knowledge on and about Chiari. Just write him a note and he will be more than happy to send you every thing you ever wanted to know about it. His name is Eurico and he is from Canada. Bill is absolutly right, Chiari has so many symptoms that mimick PD/MSA.. Take care and the best of luck to you. " tenacity's man " ejfs@... --------------------------------------------------------------------- > >Reply-To: shydrager >To: shydrager >Subject: Re: What is wrong with me? >Date: Mon, 02 Sep 2002 22:44:12 -0400 > >Tony, > >No to all. I just notice that symptoms of Chiari - syrinx and MSA are >similar. Over the past 3 years I have seen a few people who thought MSA >and ended up as Chiari. The symptoms usually come from the cyst which >forms due to the Chiari. Chiari is fairly easy to diagnose with a MRI of >the brain stem/upper spine area. My daughter's doctors caught it within >weeks, but took months before deciding not to operate (and one of three >wanted to operate). > >The Chiari itself is a birth defect, so symptoms are brough on by the cyst. > It is not caused by MSA, but could be caused by the same gene which >causes the MSA - who knows? > >Take care, Bill Werre > >============================ > >swartzlloyd2 wrote: > >>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...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Thank you. I just started seeing this endocronolgist and want to give him a chance. I have heard great things about him. The neurologist; however, is ready to sign off on migraine. As I said before, I have had migraines all my life (since age 7) and have never had a migraine do this to me. I have asthma and have an anaphylatic reaction to live poinsettias. For these reasons I have been off and on prednisone almost all my life. Both my parents and three of my four brothers are diabetic, though, so I feel genetics had a greater role than the cortisone. that and my weight won't go down, despite regular workouts (before I got sick). Even now, it has stayed the same as it was when I was working out three times a week for an hour and walking every night. Go figure. I will keep searching for answers. I know all too well that my doctor only has as much time as the HMO allows to think about me. Donna > 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 > > > > From: " donnamixon " > > Reply-To: shydrager@y... > > Date: Sun, 01 Sep 2002 21:00:24 -0000 > > To: shydrager@y... > > 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@y... > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 The only diagnoses anyone has even batted around are cerebralvascular disease and syncope. I have been taking Plavix for a suspected blood clot, but there are no clues on my MRA or MRI to show that one exists. Anyway, that was only to explain the drooping face. No one has any idea what is causing the other. All I hear is " Well, we know something is terribly wrong, but don't know what it is. " I guess the doctors need to practice more. I am trying not to get discouraged, but this is really frustrating. I will ask my neurologist and endocronologist about this as well. Thanks for the encouragement. Donna > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Thanks, I will look into it. I really hope this is not what is going on. I have three kids to look out for and a new husband. Donna > 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_000 965832 > 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 > Re: What is wrong with me? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 I am in Houston/Galveston. Any ideas as to who might be a good doctor? Donna > You need a neurologist who understand neuro degenerative processes ASAP. > Let the list know where you live as there are folks here who can identify > such a specialist in your area hopefully. Your symptoms seem to be classic > MSA, but we are not MDs. Get good professional help immediately. > > Take your list of symptoms to your first appointment. They are well written. > > Message: 13 > Date: Sun, 01 Sep 2002 21:00:24 -0000 > From: " donnamixon " > 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!!!!! > > > > > Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 I am not scheduled for anything yet. I want to be armed with information when I go in so I can get some answers from my doctor rather than hearing, " Well, that didn't work. Let's try this. " Donna > > > > 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_000 965832 > > 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 I will certainly keep pushing my doctors to figure out what is wrong. Fortunately I have a great insurance company that wants to know as well. They haven't denied anything yet. As a matter of fact, the insurance doctor is the one who recommended I have an ENG done just to be certain it wasn't an inner ear infection. Thank you for the guidance. I will keep pressing forward in my search for knowledge. 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 3, 2002 Report Share Posted September 3, 2002 Donna, Keep fighting... it will pay off. The answers are out there to your puzzle, it's just not giving up on yourself and continuing to insist that you need further study. As far as your HMO goes. We got me a case manager by calling the insurance company and requesting one. talked to her, sometimes just to call and say hi, at least 2-3 times per week. When it came time for me to get expensive durable equipment and rare tests and procedures... by calling her...after establishing a relationship... we got EVERYTHING we asked for. It is only b/c of this relationship that we were approved for the 14 day hospital stay in Long Island and approved for EVERY test they wanted to run. She even went so far as to call , tell him what kind of Rx she needed from the doctor to get me all of the equipment.... electric wheelchair, hoyer lift, hospital table for the bed, air mattress, walker and 3 in 1 shower chair. Establishing a relationship with your insurance case manager is extremely important. You are entitled one when you are dx with a long term disorder. Hugs and Warm Fuzzies, Deborah aka Tenacity _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 3, 2002 Report Share Posted September 3, 2002 Dr ph Jancovik at Baylor College of Medicine in Houston. Ginger 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!!!!! > > > > > > > > > > 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 September 3, 2002 Report Share Posted September 3, 2002 Thanks! I will look him up. Donna > Dr ph Jancovik at Baylor College of Medicine in Houston. > Ginger > Re: What is wrong with me? > > > > I am in Houston/Galveston. Any ideas as to who might be a good > > doctor? > > > > Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Hi Donna. My eyes are freaking big time tonight (seems to be getting progressively worse)... but... I want to at least get a response out to this one. In your post, you said " The neurologist; however, is ready to sign off on migraine. As I said before, I have had migraines all my life (since age 7) and have never had a migraine do this to me. " I can't remember what you were talking about here... (my memory :-) but I had migraines since a teenager. I was unaware that I am still having them, until seeing a neuro-ophthalmologist. We only have one in OK - but he's a really good one. He said that I'm having migraines. Multiple, daily - at the rate of 7 to 20 per day - estimate. In fact, some days - like today, I have a hard time knowing when one ends, and another begins. However, I have absolutely no headache when it occurs. That is a blessing. But, it is also a curse. Because I haven't taken them seriously due to the lack of headaches - and that same doc theorizes that I have had a TIAs in the nerve center of my brain as a result of migraines. In retrospect, we could identify 3 such occurences, and he said that the nerve center is so small, that it wouldn't show up on an MRI. Seems you also wrote about having some neuropathy symptoms. If so, I'd question whether such could be related to migraines. However, I am reminded that diabetes and autonomic neuropathy do go hand in hand at times. Regarding your weight... " Even now, it has stayed the same as it was when I was working out three times a week for an hour and walking every night. Go figure. " If my memory serves me right, from Anatomy and Physiology classes a few years ago (I was cross-training in medicine from psychology), muscle weighs more than fat. Thus, when we work out - even though our bodies tone up - we often find ourselves weighing more. And, conversely, when we lose that muscle mass, and it converts back to fat, we sometimes find we do not lose weight - because we decrease activity and gain more fat than the muscle weight we lose. Make any sense of that? Hope so :-) Regarding your statement " I will keep searching for answers. I know all too well that my doctor only has as much time as the HMO allows to think about me. " Yes, you are and will likely remain - your greatest advocate. I took the passenger seat some months back, and let others take control. That resulted in chaos. I took a bit back. I got to Mayo - where I wanted to go. They helped a bit. Since, I have found info from so many sources I cannot cite them all. My biggest ally is my internist - who joins me in my zeal for seeking out what is going on. However, she too falls in the typical medical community. Too many patients, not enough time. I am a time-intensive case - with little hope for a cure. She has other patients for whom a cure, or at least effective treatment, is reasonably expected. So, she will, rationally be drawn to spend more time with them. I do know though - that she is genuinely concerned about my welfare, and she has proven to be an ally to the hilt. In fact, while at the hospital where she insisted I go (or die - to use her words - back 6 months ago) - she was truly my only ally. She even used Job from the Bible as an encouragement to me. This points again to your need to get a doc on your side. To me, the type is not as important as the heart. True, knowledge is important, and I don't mean to play that down, but especially in a complex case such as yours, you're going to need someone who can admit they don't know it all - and be willing to accept input from others to get to the bottom (or near it anyway :-). But hey! Maybe your endocrinologist will find solutions which will explain it all. Never know. I would recommend you check out www.ndrf.org if you haven't already. Check out their discussion group, as you might find some others with similar symptoms there. With prayers of continued blessings, and open eyes to see the blessings which surround you... :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 True to form... I'm still up. But not much longer... :-) You wrote:--- " I have been taking Plavix for a suspected blood clot, but there are no clues on my MRA or MRI to show that one exists. " Again, a specialist may have a different explanation for you. Or, he/she may even tell you that you could have one, but it not show up on the MRI. A question worth asking. Of course, results can be interpreted many ways. That is where experience comes in - like my ENT, who knew based upon what he saw (and didn't see) that it was likely autonomic neuropathy throwing the results he was getting. " Anyway, that was only to explain the drooping face. No one has any idea what is causing the other. All I hear is " Well, we know something is terribly wrong, but don't know what it is. " I guess the doctors need to practice more. " Well, that is why they call it a " private practice " . Of course, I know of few other professions where one gets paid so well to " practice " . :-) " I am trying not to get discouraged, but this is really frustrating. " Yep. I know it can be. We've all been there. In fact, many of us are " still there " :-) That is, of course, to a large degree, why we are " here " - at this group - to help each other make sense of the nonsensical. We are, after all - a group which defies all reason. Kinda like that misfit group of toys in that old Rudolph (the red- nosed reindeer - spelling looks wrong on that one - movie :-) Except, rather than being rejected by children - we are often rejected by docs :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hey, don't beat yourself up over a candy bar. 240 calories is not the end of the world. Just smile, call it a mistake and stay the course. You have had so many successes, there was bound to be a misstep now and again. Remember, we all want you to be the best you, not the perfect you, there was only one perfect person, and look what happened to him. :-) > > I gotta tell you guys... there must be something wrong with me. I got up this morning and my foot is bothering me more today than yesterday. I had an appt at Kaiser Napa this morning, so I have some breakfast (oatmeal) and get ready to go. I get to Kaiser, hobble on in, get the dressing on my legs changed and decide I want to see how I'm doing on the weight. On this past Tuesday, as some of you may recall, I was at 466. I weighed in today at 463. So, needless to to say, I was very pleased with myself. My Mom (who was driving me [i don't own a car]) said she needed to stop at the store to pick up a couple things. I decided it was a good opportunity to get in a little extra walking, even though my foot is killing me by now. So I go in and decided to buy a loaf of my low cal bread and some English muffins. Now these things in themselves are fine because they will last me a couple weeks, easy. And then, what did I do? I picked up a damn candy bar, paid for it and then even ate it. It's like my olf sub-conscience ways took over and I didn't " wake up " until the damage was done. I don't go into grocery stores often for this very reason. Although lately, I've been doing pretty good... I just " put on my blinders " and I can get through the store without buying things I shouldn't be. I like going there though, because it's good walking exercise for me. I don't know... sometimes I just sabotage myself... what's up with that? Anyway, just venting... thanks for listening. > > Ron > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 No, Ron - there's nothing wrong with you except years and years of bad habits that you're trying to change. Look at it this way: now you're AWARE of what you're doing. You know what you did, you " caught " it mentally, and you realized that you made a mistake. What you DIDN'T do was then say " screw it " , go out, and pig out on five more candy bars because " what's the use " . Right? It's all about progress - and you're making progress. You can do it! Cathy > > I gotta tell you guys... there must be something wrong with me. I got up this morning and my foot is bothering me more today than yesterday. I had an appt at Kaiser Napa this morning, so I have some breakfast (oatmeal) and get ready to go. I get to Kaiser, hobble on in, get the dressing on my legs changed and decide I want to see how I'm doing on the weight. On this past Tuesday, as some of you may recall, I was at 466. I weighed in today at 463. So, needless to to say, I was very pleased with myself. My Mom (who was driving me [i don't own a car]) said she needed to stop at the store to pick up a couple things. I decided it was a good opportunity to get in a little extra walking, even though my foot is killing me by now. So I go in and decided to buy a loaf of my low cal bread and some English muffins. Now these things in themselves are fine because they will last me a couple weeks, easy. And then, what did I do? I picked up a damn candy bar, paid for it and then even ate it. It's like my olf sub-conscience ways took over and I didn't " wake up " until the damage was done. I don't go into grocery stores often for this very reason. Although lately, I've been doing pretty good... I just " put on my blinders " and I can get through the store without buying things I shouldn't be. I like going there though, because it's good walking exercise for me. I don't know... sometimes I just sabotage myself... what's up with that? Anyway, just venting... thanks for listening. > > Ron > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 No, Ron - there's nothing wrong with you except years and years of bad habits that you're trying to change. Look at it this way: now you're AWARE of what you're doing. You know what you did, you " caught " it mentally, and you realized that you made a mistake. What you DIDN'T do was then say " screw it " , go out, and pig out on five more candy bars because " what's the use " . Right? It's all about progress - and you're making progress. You can do it! Cathy > > I gotta tell you guys... there must be something wrong with me. I got up this morning and my foot is bothering me more today than yesterday. I had an appt at Kaiser Napa this morning, so I have some breakfast (oatmeal) and get ready to go. I get to Kaiser, hobble on in, get the dressing on my legs changed and decide I want to see how I'm doing on the weight. On this past Tuesday, as some of you may recall, I was at 466. I weighed in today at 463. So, needless to to say, I was very pleased with myself. My Mom (who was driving me [i don't own a car]) said she needed to stop at the store to pick up a couple things. I decided it was a good opportunity to get in a little extra walking, even though my foot is killing me by now. So I go in and decided to buy a loaf of my low cal bread and some English muffins. Now these things in themselves are fine because they will last me a couple weeks, easy. And then, what did I do? I picked up a damn candy bar, paid for it and then even ate it. It's like my olf sub-conscience ways took over and I didn't " wake up " until the damage was done. I don't go into grocery stores often for this very reason. Although lately, I've been doing pretty good... I just " put on my blinders " and I can get through the store without buying things I shouldn't be. I like going there though, because it's good walking exercise for me. I don't know... sometimes I just sabotage myself... what's up with that? Anyway, just venting... thanks for listening. > > Ron > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Thanks Cathy. And yes, you are right. I'm just forging ahead... Ron Re: What is wrong with me? No, Ron - there's nothing wrong with you except years and years of bad habits that you're trying to change. Look at it this way: now you're AWARE of what you're doing. You know what you did, you "caught" it mentally, and you realized that you made a mistake. What you DIDN'T do was then say "screw it", go out, and pig out on five more candy bars because "what's the use". Right?It's all about progress - and you're making progress. You can do it!Cathy>> I gotta tell you guys... there must be something wrong with me. I got up this morning and my foot is bothering me more today than yesterday. I had an appt at Kaiser Napa this morning, so I have some breakfast (oatmeal) and get ready to go. I get to Kaiser, hobble on in, get the dressing on my legs changed and decide I want to see how I'm doing on the weight. On this past Tuesday, as some of you may recall, I was at 466. I weighed in today at 463. So, needless to to say, I was very pleased with myself. My Mom (who was driving me [i don't own a car]) said she needed to stop at the store to pick up a couple things. I decided it was a good opportunity to get in a little extra walking, even though my foot is killing me by now. So I go in and decided to buy a loaf of my low cal bread and some English muffins. Now these things in themselves are fine because they will last me a couple weeks, easy. And then, what did I do? I picked up a damn candy bar, paid for it and then even ate it. It's like my olf sub-conscience ways took over and I didn't "wake up" until the damage was done. I don't go into grocery stores often for this very reason. Although lately, I've been doing pretty good... I just "put on my blinders" and I can get through the store without buying things I shouldn't be. I like going there though, because it's good walking exercise for me. I don't know... sometimes I just sabotage myself... what's up with that? Anyway, just venting... thanks for listening.> > Ron> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Thanks Cathy. And yes, you are right. I'm just forging ahead... Ron Re: What is wrong with me? No, Ron - there's nothing wrong with you except years and years of bad habits that you're trying to change. Look at it this way: now you're AWARE of what you're doing. You know what you did, you "caught" it mentally, and you realized that you made a mistake. What you DIDN'T do was then say "screw it", go out, and pig out on five more candy bars because "what's the use". Right?It's all about progress - and you're making progress. You can do it!Cathy>> I gotta tell you guys... there must be something wrong with me. I got up this morning and my foot is bothering me more today than yesterday. I had an appt at Kaiser Napa this morning, so I have some breakfast (oatmeal) and get ready to go. I get to Kaiser, hobble on in, get the dressing on my legs changed and decide I want to see how I'm doing on the weight. On this past Tuesday, as some of you may recall, I was at 466. I weighed in today at 463. So, needless to to say, I was very pleased with myself. My Mom (who was driving me [i don't own a car]) said she needed to stop at the store to pick up a couple things. I decided it was a good opportunity to get in a little extra walking, even though my foot is killing me by now. So I go in and decided to buy a loaf of my low cal bread and some English muffins. Now these things in themselves are fine because they will last me a couple weeks, easy. And then, what did I do? I picked up a damn candy bar, paid for it and then even ate it. It's like my olf sub-conscience ways took over and I didn't "wake up" until the damage was done. I don't go into grocery stores often for this very reason. Although lately, I've been doing pretty good... I just "put on my blinders" and I can get through the store without buying things I shouldn't be. I like going there though, because it's good walking exercise for me. I don't know... sometimes I just sabotage myself... what's up with that? Anyway, just venting... thanks for listening.> > Ron> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Ron, don't be so hard on yourself. I'm a chocoholic, and I couldn't even guess how many candybars I ate during my 10% phase. Move on. See how many days in a row you can follow the plan, then celebrate your accomplishment instead of bashing yourself for breaking your streak. We are human. Laurie __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Ron, don't be so hard on yourself. I'm a chocoholic, and I couldn't even guess how many candybars I ate during my 10% phase. Move on. See how many days in a row you can follow the plan, then celebrate your accomplishment instead of bashing yourself for breaking your streak. We are human. Laurie __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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