Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 , I have cp in both knees, had scrape in right knee and nothing in left and the right still hurts me more. I always suggest surgery should be a last resort. I am improving every day, walking on an inclined treadmill and staying away from stairs altogether. I had to completely remodel my life to stay away from stairs but I have improved greatly. Try to eat a little something with your advil, aleve to lessen your risk of stomach trouble. Best of luck, --- arbrador@... wrote: > Hello, > I've had " chondromalacia " for about 3 months now. My > doctor was > Dye who believes that most of it is caused by > synovitis but he still > wanted to do surgery on me to clean it up and also > have a torn > meniscus on MRI. A second opinion said no way should > I have surgery. > 80% get better on their own with Alleve and intense > PT to strengthen > VMO. That's what I'm doing now and think it's a > little better but > still get pain under the kneecap and can't do any > stair or hill > climbing. Especially going down stairs is bad. Do > many people get > better by 6 months? When should I look into Synvsc? > Will that help me? > Should I have had surgery as Dye recommended? > Thanks, > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 I definitely recommend surgery as a last option. I haven't had the numerous surgeries of some of the people I've talked to and seen online, but the one I had about 15 years ago didn't help, and made things worse. It was a lateral release, medial reef. I apparently have a genetic mal-tracking of the patella, my L knee is also grinding, but the R knee that has had 2 injuries (both were blows to the side of the knee causing a partial dislocation of the kneecap) and the release surgery is MUCH worse. This last July, I had a diagnostic scope and cleanout and my OS took the cartilage cells for the ACI/Carticel. Initially, the cleanout helped a lot, but now 4 months later I'm having pain again and its worsening rapidly. The surgical options before the CP progresses to stage IV (exposed bone) involve trying to realign the knee to stop the rubbing or grinding, whatever is causing the damage. They involve soft tissue (loosening/tightening the ligaments in the knee) and bony realignments (cutting into the tibia and using screws to move a piece up/down/over to change the knee dynamics). I don't know alot about Synvisc, it is an injection that helps lubricate the joint, I think it's useful only before bone is exposed, but hopefully someone who knows more about it will chime in. Once the cartilage is gone (stage IV), the options are bleak. Microfracture/abrasion/drilling are all methods that involve getting the stem cells from the bone marrow to seep up and form a clot in the gap which forms a cartilage scar tissue. Various forms of cartilage transplant, either from a cadaver, from another area of cartilage, or the ACI/Carticel where cells are cultured from a small biopsy that's taken and put back in the gap to grow. both of the above options have a long recovery (12-18 months before normal usage with sports & such) Then there's partial or total knee replacement. The longer you can stay active without cutting into the knee, the better. Bracing, possibly with a patella buttress, can help for some people. Ice is your friend, as are NSAIDs. Swimming and low impact exercises. Just my spare change, YMMV. Meg. On Nov 8, 2007 10:21 AM, <arbrador@...> wrote: > Hello, > I've had " chondromalacia " for about 3 months now. My doctor was > Dye who believes that most of it is caused by synovitis but he still > wanted to do surgery on me to clean it up and also have a torn > meniscus on MRI. A second opinion said no way should I have surgery. > 80% get better on their own with Alleve and intense PT to strengthen > VMO. That's what I'm doing now and think it's a little better but > still get pain under the kneecap and can't do any stair or hill > climbing. Especially going down stairs is bad. Do many people get > better by 6 months? When should I look into Synvsc? Will that help me? > Should I have had surgery as Dye recommended? > Thanks, > > > -- Truth is not determined by a majority vote. -- Doug Gwyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2007 Report Share Posted November 8, 2007 I have had the Synvisc. I do not remember being told any stage for my condition but my Ortho wanted to do cortisone inject and I refused. This was my next option. It replaces lost fluid from the knee capsule and is suppose to help generate new fluid. I was told it either will work for you or it wont and they were hoping to get 6-18 months of comfort. I have gotten several years out of it and am only just now thinking about going back for another round. I am probably one of the lucky ones. Although I have had this condition as long as I remember I am not incapacitated by it or I refuse to be anyway. When my son was 13 we went to Walt Disney World for our first time and I hit a point in our vacation when I was in absolute agony but kept pushing. I would sit frequently and seriously thought I was going to be crippled in one knee by the time I got home. Every evening I would pop Advil and get up and go again the next day. I have a fairly high tolerance to the pain. Just my experience. in NY " Meg F. " <meghann.fearn@...> wrote: I definitely recommend surgery as a last option. I haven't had the numerous surgeries of some of the people I've talked to and seen online, but the one I had about 15 years ago didn't help, and made things worse. It was a lateral release, medial reef. I apparently have a genetic mal-tracking of the patella, my L knee is also grinding, but the R knee that has had 2 injuries (both were blows to the side of the knee causing a partial dislocation of the kneecap) and the release surgery is MUCH worse. This last July, I had a diagnostic scope and cleanout and my OS took the cartilage cells for the ACI/Carticel. Initially, the cleanout helped a lot, but now 4 months later I'm having pain again and its worsening rapidly. The surgical options before the CP progresses to stage IV (exposed bone) involve trying to realign the knee to stop the rubbing or grinding, whatever is causing the damage. They involve soft tissue (loosening/tightening the ligaments in the knee) and bony realignments (cutting into the tibia and using screws to move a piece up/down/over to change the knee dynamics). I don't know alot about Synvisc, it is an injection that helps lubricate the joint, I think it's useful only before bone is exposed, but hopefully someone who knows more about it will chime in. Once the cartilage is gone (stage IV), the options are bleak. Microfracture/abrasion/drilling are all methods that involve getting the stem cells from the bone marrow to seep up and form a clot in the gap which forms a cartilage scar tissue. Various forms of cartilage transplant, either from a cadaver, from another area of cartilage, or the ACI/Carticel where cells are cultured from a small biopsy that's taken and put back in the gap to grow. both of the above options have a long recovery (12-18 months before normal usage with sports & such) Then there's partial or total knee replacement. The longer you can stay active without cutting into the knee, the better. Bracing, possibly with a patella buttress, can help for some people. Ice is your friend, as are NSAIDs. Swimming and low impact exercises. Just my spare change, YMMV. Meg. On Nov 8, 2007 10:21 AM, <arbrador@...> wrote: > Hello, > I've had " chondromalacia " for about 3 months now. My doctor was > Dye who believes that most of it is caused by synovitis but he still > wanted to do surgery on me to clean it up and also have a torn > meniscus on MRI. A second opinion said no way should I have surgery. > 80% get better on their own with Alleve and intense PT to strengthen > VMO. That's what I'm doing now and think it's a little better but > still get pain under the kneecap and can't do any stair or hill > climbing. Especially going down stairs is bad. Do many people get > better by 6 months? When should I look into Synvsc? Will that help me? > Should I have had surgery as Dye recommended? > Thanks, > > > -- Truth is not determined by a majority vote. -- Doug Gwyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor syndrome... > > Long story short, in 8 years of hunting for the carcinoid tumor (which can occur anywhere in the body) as a source of the syndrome - no carcinoid tumor has ever been found. HOWEVER, early in the diagnostic process, an adenoma was found on my left adrenal gland. No biochemical workup was done (tunnel vision, I think, due to the hunt for the carcinoid). > > An odd turn of events caused me to start researching the ol' adrenal tumor - and I have been learning about Conn's syndrome for the last week. I want to have my doc test me for it, but I need to learn more about the clinical picture. > > My doc's have focused on carcinoid syndrome because of the facial flushing I have - I can't find many references that talk about facial flushing with Conn's syndrome - but I would like to know how common that is. > > I will give a cliff notes version of my medical history - am interested if any of you with Conn's syndrome have similar symptoms, or if I am barking up the wrong tree... > > Symptoms: > > Palpitations > Sinus tachycardia > Fatigue, Fatigue, Fatigue - and more fatigue!! > facial flushing > hirsutism (I have a goatee that rival's my husband's) > increased thirst > increased urination > Pre-eclampsia in pregnancy that hit like a runaway freight train and couldn't be controlled - labile hypertension during pre-eclampsia > > Symptoms are triggered by exertion, eating - especially high carb foods or foods high in tyramine, AND by postural changes from lying down to sitting or standing - symptoms worsen when I am sitting or standing for long periods of time. For last 8 years haven't been able to tolerate even ,ong car trips - even with my husband driving - jsut as a passenger, severe fatigue and mild to moderate flushing from sitting upright for several hours. (early work-ups for orthostatic conditions were negative - but I definitely have tachycardia when rising from a lying down position- much improved on calcium channel blockers) > > Symptoms: > Hypertension, fatigue, etc moderately controlled with sandostatin (a synthetic version of a natural hormone somatostatin) that acts as a giant " off-switch " for endocrine systems (and I have recently learned that it can control hyperaldosteronism - but it doesn't control it as well as other meds and it doesn't control it as well as it controls carcinoid syndrome). > > 2 months ago I started calcium channel blocker (Norvasc) to help control exertion intolerance and exertion triggered tachycardia and hypertension - amazing improvement in all " carcinoid symptoms " . (calcium channnel blockers don't do a thing for carcinoid...) > > I traveled 420 miles each way for Thanksgiving this year with NO fatigue. Then I traveled a total of 1200 miles over Christmas - a three leg trip to my inlaws, then my parents, then home - NO fatigue. > > My husband and I have been amazed and shocked at this turn of events. I have been weaning off the sandostatin - as I do every year around this time for an octreoscan to hunt for the carcinoid tumor - I feel so good I cannot believe it. The calcium channel blocker is controlling all my symptoms so much better than the sandostatin - which prompted me to dig a little deeper. > > So, the facial flushing is what has kept my docs lookimng for the carcinoid - but I am beginning to think that the visible adrenal tumor may be the culprit rather than the invisible carcinoid tumor... > > Any thoughts? > > I'd be especially interested in hearing from anyone who has facial flushing, or women who have hirsutism (excess facial hair that is stiff and dark - like a man's whiskers) or women who have had uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism... > > Thanks! > > Joyce in Cinci Dear Joyce, Just posted about facial sweats. I had terrible facial sweats when my PA returned about 6 months ago after removal of left adrenal gland.I found an article that lists facial sweats as a symptom - http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has had facial hair and chest hair since her early 20's. She also had pre- eclampsia during pregnancy. She takes 200mg spiro a day for about 20 years and it has controlled these symptoms. Interesting coincidence with the spiro. Good Luck, Jan > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2008 Report Share Posted January 16, 2008 Thanks, Jan, for the info! ---- ipscalifornia <jarrigo@...> wrote: > > > > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor > syndrome... > > > > Long story short, in 8 years of hunting for the carcinoid tumor > (which can occur anywhere in the body) as a source of the syndrome - > no carcinoid tumor has ever been found. HOWEVER, early in the > diagnostic process, an adenoma was found on my left adrenal gland. No > biochemical workup was done (tunnel vision, I think, due to the hunt > for the carcinoid). > > > > An odd turn of events caused me to start researching the ol' > adrenal tumor - and I have been learning about Conn's syndrome for > the last week. I want to have my doc test me for it, but I need to > learn more about the clinical picture. > > > > My doc's have focused on carcinoid syndrome because of the facial > flushing I have - I can't find many references that talk about facial > flushing with Conn's syndrome - but I would like to know how common > that is. > > > > I will give a cliff notes version of my medical history - am > interested if any of you with Conn's syndrome have similar symptoms, > or if I am barking up the wrong tree... > > > > Symptoms: > > > > Palpitations > > Sinus tachycardia > > Fatigue, Fatigue, Fatigue - and more fatigue!! > > facial flushing > > hirsutism (I have a goatee that rival's my husband's) > > increased thirst > > increased urination > > Pre-eclampsia in pregnancy that hit like a runaway freight train > and couldn't be controlled - labile hypertension during pre-eclampsia > > > > Symptoms are triggered by exertion, eating - especially high carb > foods or foods high in tyramine, AND by postural changes from lying > down to sitting or standing - symptoms worsen when I am sitting or > standing for long periods of time. For last 8 years haven't been able > to tolerate even ,ong car trips - even with my husband driving - jsut > as a passenger, severe fatigue and mild to moderate flushing from > sitting upright for several hours. (early work-ups for orthostatic > conditions were negative - but I definitely have tachycardia when > rising from a lying down position- much improved on calcium channel > blockers) > > > > Symptoms: > > Hypertension, fatigue, etc moderately controlled with sandostatin > (a synthetic version of a natural hormone somatostatin) that acts as > a giant " off-switch " for endocrine systems (and I have recently > learned that it can control hyperaldosteronism - but it doesn't > control it as well as other meds and it doesn't control it as well as > it controls carcinoid syndrome). > > > > 2 months ago I started calcium channel blocker (Norvasc) to help > control exertion intolerance and exertion triggered tachycardia and > hypertension - amazing improvement in all " carcinoid symptoms " . > (calcium channnel blockers don't do a thing for carcinoid...) > > > > I traveled 420 miles each way for Thanksgiving this year with NO > fatigue. Then I traveled a total of 1200 miles over Christmas - a > three leg trip to my inlaws, then my parents, then home - NO fatigue. > > > > My husband and I have been amazed and shocked at this turn of > events. I have been weaning off the sandostatin - as I do every year > around this time for an octreoscan to hunt for the carcinoid tumor - > I feel so good I cannot believe it. The calcium channel blocker is > controlling all my symptoms so much better than the sandostatin - > which prompted me to dig a little deeper. > > > > So, the facial flushing is what has kept my docs lookimng for the > carcinoid - but I am beginning to think that the visible adrenal > tumor may be the culprit rather than the invisible carcinoid tumor... > > > > Any thoughts? > > > > I'd be especially interested in hearing from anyone who has facial > flushing, or women who have hirsutism (excess facial hair that is > stiff and dark - like a man's whiskers) or women who have had > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism... > > > > Thanks! > > > > Joyce in Cinci > > Dear Joyce, > > Just posted about facial sweats. I had terrible facial sweats when > my PA returned about 6 months ago after removal of left adrenal > gland.I found an article that lists facial sweats as a symptom - > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has > had facial hair and chest hair since her early 20's. She also had pre- > eclampsia during pregnancy. She takes 200mg spiro a day for about 20 > years and it has controlled these symptoms. Interesting coincidence > with the spiro. > > Good Luck, Jan > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 Not enough to go on here yet without a bit of blood work. Do you have a recent Aldosterone-Renin Ratio? Have you trialed spirinolactone? On 1/16/08, carcinoidnews@... <carcinoidnews@...> wrote: > Thanks, Jan, for the info! > > ---- ipscalifornia <jarrigo@...> wrote: > > > > > > > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with > > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor > > syndrome... > > > > > > Long story short, in 8 years of hunting for the carcinoid tumor > > (which can occur anywhere in the body) as a source of the syndrome - > > no carcinoid tumor has ever been found. HOWEVER, early in the > > diagnostic process, an adenoma was found on my left adrenal gland. No > > biochemical workup was done (tunnel vision, I think, due to the hunt > > for the carcinoid). > > > > > > An odd turn of events caused me to start researching the ol' > > adrenal tumor - and I have been learning about Conn's syndrome for > > the last week. I want to have my doc test me for it, but I need to > > learn more about the clinical picture. > > > > > > My doc's have focused on carcinoid syndrome because of the facial > > flushing I have - I can't find many references that talk about facial > > flushing with Conn's syndrome - but I would like to know how common > > that is. > > > > > > I will give a cliff notes version of my medical history - am > > interested if any of you with Conn's syndrome have similar symptoms, > > or if I am barking up the wrong tree... > > > > > > Symptoms: > > > > > > Palpitations > > > Sinus tachycardia > > > Fatigue, Fatigue, Fatigue - and more fatigue!! > > > facial flushing > > > hirsutism (I have a goatee that rival's my husband's) > > > increased thirst > > > increased urination > > > Pre-eclampsia in pregnancy that hit like a runaway freight train > > and couldn't be controlled - labile hypertension during pre-eclampsia > > > > > > Symptoms are triggered by exertion, eating - especially high carb > > foods or foods high in tyramine, AND by postural changes from lying > > down to sitting or standing - symptoms worsen when I am sitting or > > standing for long periods of time. For last 8 years haven't been able > > to tolerate even ,ong car trips - even with my husband driving - jsut > > as a passenger, severe fatigue and mild to moderate flushing from > > sitting upright for several hours. (early work-ups for orthostatic > > conditions were negative - but I definitely have tachycardia when > > rising from a lying down position- much improved on calcium channel > > blockers) > > > > > > Symptoms: > > > Hypertension, fatigue, etc moderately controlled with sandostatin > > (a synthetic version of a natural hormone somatostatin) that acts as > > a giant " off-switch " for endocrine systems (and I have recently > > learned that it can control hyperaldosteronism - but it doesn't > > control it as well as other meds and it doesn't control it as well as > > it controls carcinoid syndrome). > > > > > > 2 months ago I started calcium channel blocker (Norvasc) to help > > control exertion intolerance and exertion triggered tachycardia and > > hypertension - amazing improvement in all " carcinoid symptoms " . > > (calcium channnel blockers don't do a thing for carcinoid...) > > > > > > I traveled 420 miles each way for Thanksgiving this year with NO > > fatigue. Then I traveled a total of 1200 miles over Christmas - a > > three leg trip to my inlaws, then my parents, then home - NO fatigue. > > > > > > My husband and I have been amazed and shocked at this turn of > > events. I have been weaning off the sandostatin - as I do every year > > around this time for an octreoscan to hunt for the carcinoid tumor - > > I feel so good I cannot believe it. The calcium channel blocker is > > controlling all my symptoms so much better than the sandostatin - > > which prompted me to dig a little deeper. > > > > > > So, the facial flushing is what has kept my docs lookimng for the > > carcinoid - but I am beginning to think that the visible adrenal > > tumor may be the culprit rather than the invisible carcinoid tumor... > > > > > > Any thoughts? > > > > > > I'd be especially interested in hearing from anyone who has facial > > flushing, or women who have hirsutism (excess facial hair that is > > stiff and dark - like a man's whiskers) or women who have had > > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism... > > > > > > Thanks! > > > > > > Joyce in Cinci > > > > Dear Joyce, > > > > Just posted about facial sweats. I had terrible facial sweats when > > my PA returned about 6 months ago after removal of left adrenal > > gland.I found an article that lists facial sweats as a symptom - > > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has > > had facial hair and chest hair since her early 20's. She also had pre- > > eclampsia during pregnancy. She takes 200mg spiro a day for about 20 > > years and it has controlled these symptoms. Interesting coincidence > > with the spiro. > > > > Good Luck, Jan > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2008 Report Share Posted January 17, 2008 Joyce, The facial flushing sounds to me like Cushing's. I had Conn's and Cushing's. Not sure which was worse. My face was always beet red and then came the weight gain. I was cyclic so I went from one extreme to the other. I finally had to have my adrenals out and had 8 bright yellow nodules on them. It will be 2 years in May since surgery and I am now feeling good. It has been a long and hard journey though, My face is fine now unless I get too warm, my blood pressure is good too. The fatigue is getting some better but I'm not sure it will ever go away. I have to take steroids and will for the rest of my life because of no adrenal hormones. Just thought it may be something you want to check out. Violet carcinoidnews@... wrote: Thanks, Jan, for the info! ---- ipscalifornia <jarrigo@...> wrote: > > > > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor > syndrome... > > > > Long story short, in 8 years of hunting for the carcinoid tumor > (which can occur anywhere in the body) as a source of the syndrome - > no carcinoid tumor has ever been found. HOWEVER, early in the > diagnostic process, an adenoma was found on my left adrenal gland. No > biochemical workup was done (tunnel vision, I think, due to the hunt > for the carcinoid). > > > > An odd turn of events caused me to start researching the ol' > adrenal tumor - and I have been learning about Conn's syndrome for > the last week. I want to have my doc test me for it, but I need to > learn more about the clinical picture. > > > > My doc's have focused on carcinoid syndrome because of the facial > flushing I have - I can't find many references that talk about facial > flushing with Conn's syndrome - but I would like to know how common > that is. > > > > I will give a cliff notes version of my medical history - am > interested if any of you with Conn's syndrome have similar symptoms, > or if I am barking up the wrong tree... > > > > Symptoms: > > > > Palpitations > > Sinus tachycardia > > Fatigue, Fatigue, Fatigue - and more fatigue!! > > facial flushing > > hirsutism (I have a goatee that rival's my husband's) > > increased thirst > > increased urination > > Pre-eclampsia in pregnancy that hit like a runaway freight train > and couldn't be controlled - labile hypertension during pre-eclampsia > > > > Symptoms are triggered by exertion, eating - especially high carb > foods or foods high in tyramine, AND by postural changes from lying > down to sitting or standing - symptoms worsen when I am sitting or > standing for long periods of time. For last 8 years haven't been able > to tolerate even ,ong car trips - even with my husband driving - jsut > as a passenger, severe fatigue and mild to moderate flushing from > sitting upright for several hours. (early work-ups for orthostatic > conditions were negative - but I definitely have tachycardia when > rising from a lying down position- much improved on calcium channel > blockers) > > > > Symptoms: > > Hypertension, fatigue, etc moderately controlled with sandostatin > (a synthetic version of a natural hormone somatostatin) that acts as > a giant " off-switch " for endocrine systems (and I have recently > learned that it can control hyperaldosteronism - but it doesn't > control it as well as other meds and it doesn't control it as well as > it controls carcinoid syndrome). > > > > 2 months ago I started calcium channel blocker (Norvasc) to help > control exertion intolerance and exertion triggered tachycardia and > hypertension - amazing improvement in all " carcinoid symptoms " . > (calcium channnel blockers don't do a thing for carcinoid...) > > > > I traveled 420 miles each way for Thanksgiving this year with NO > fatigue. Then I traveled a total of 1200 miles over Christmas - a > three leg trip to my inlaws, then my parents, then home - NO fatigue. > > > > My husband and I have been amazed and shocked at this turn of > events. I have been weaning off the sandostatin - as I do every year > around this time for an octreoscan to hunt for the carcinoid tumor - > I feel so good I cannot believe it. The calcium channel blocker is > controlling all my symptoms so much better than the sandostatin - > which prompted me to dig a little deeper. > > > > So, the facial flushing is what has kept my docs lookimng for the > carcinoid - but I am beginning to think that the visible adrenal > tumor may be the culprit rather than the invisible carcinoid tumor... > > > > Any thoughts? > > > > I'd be especially interested in hearing from anyone who has facial > flushing, or women who have hirsutism (excess facial hair that is > stiff and dark - like a man's whiskers) or women who have had > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism... > > > > Thanks! > > > > Joyce in Cinci > > Dear Joyce, > > Just posted about facial sweats. I had terrible facial sweats when > my PA returned about 6 months ago after removal of left adrenal > gland.I found an article that lists facial sweats as a symptom - > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has > had facial hair and chest hair since her early 20's. She also had pre- > eclampsia during pregnancy. She takes 200mg spiro a day for about 20 > years and it has controlled these symptoms. Interesting coincidence > with the spiro. > > Good Luck, Jan > > > > --------------------------------- Looking for last minute shopping deals? Find them fast with Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2008 Report Share Posted January 18, 2008 Thanks - I appreciate the tips - I had the Cushing's tested for about 8 years ago - negative - but my current doc (an oncologist with a strong internal med background) is running a complete workup on my adrenals as a preliminary and lining me up with a good local endocrinologist - so I am glad I brought it up to him. Went through so much testing years ago that I wasn't anxious to go on a wild goose chase - bbut my doc thinks it's definitely worht looking into. Thanks for your reply! Joyce in Cinci ---- Violet Umber <viumber@...> wrote: > Joyce, > The facial flushing sounds to me like Cushing's. I had Conn's and Cushing's. Not sure which was worse. My face was always beet red and then came the weight gain. I was cyclic so I went from one extreme to the other. I finally had to have my adrenals out and had 8 bright yellow nodules on them. It will be 2 years in May since surgery and I am now feeling good. It has been a long and hard journey though, My face is fine now unless I get too warm, my blood pressure is good too. The fatigue is getting some better but I'm not sure it will ever go away. I have to take steroids and will for the rest of my life because of no adrenal hormones. > > Just thought it may be something you want to check out. Violet > > carcinoidnews@... wrote: > Thanks, Jan, for the info! > > ---- ipscalifornia <jarrigo@...> wrote: > > > > > > > > Hi- My name is Joyce Brown. I am 38 and was diagnosed with > > carcinoid syndrome 8 years ago. Carcinoid is a neuroendocrione tumor > > syndrome... > > > > > > Long story short, in 8 years of hunting for the carcinoid tumor > > (which can occur anywhere in the body) as a source of the syndrome - > > no carcinoid tumor has ever been found. HOWEVER, early in the > > diagnostic process, an adenoma was found on my left adrenal gland. No > > biochemical workup was done (tunnel vision, I think, due to the hunt > > for the carcinoid). > > > > > > An odd turn of events caused me to start researching the ol' > > adrenal tumor - and I have been learning about Conn's syndrome for > > the last week. I want to have my doc test me for it, but I need to > > learn more about the clinical picture. > > > > > > My doc's have focused on carcinoid syndrome because of the facial > > flushing I have - I can't find many references that talk about facial > > flushing with Conn's syndrome - but I would like to know how common > > that is. > > > > > > I will give a cliff notes version of my medical history - am > > interested if any of you with Conn's syndrome have similar symptoms, > > or if I am barking up the wrong tree... > > > > > > Symptoms: > > > > > > Palpitations > > > Sinus tachycardia > > > Fatigue, Fatigue, Fatigue - and more fatigue!! > > > facial flushing > > > hirsutism (I have a goatee that rival's my husband's) > > > increased thirst > > > increased urination > > > Pre-eclampsia in pregnancy that hit like a runaway freight train > > and couldn't be controlled - labile hypertension during pre-eclampsia > > > > > > Symptoms are triggered by exertion, eating - especially high carb > > foods or foods high in tyramine, AND by postural changes from lying > > down to sitting or standing - symptoms worsen when I am sitting or > > standing for long periods of time. For last 8 years haven't been able > > to tolerate even ,ong car trips - even with my husband driving - jsut > > as a passenger, severe fatigue and mild to moderate flushing from > > sitting upright for several hours. (early work-ups for orthostatic > > conditions were negative - but I definitely have tachycardia when > > rising from a lying down position- much improved on calcium channel > > blockers) > > > > > > Symptoms: > > > Hypertension, fatigue, etc moderately controlled with sandostatin > > (a synthetic version of a natural hormone somatostatin) that acts as > > a giant " off-switch " for endocrine systems (and I have recently > > learned that it can control hyperaldosteronism - but it doesn't > > control it as well as other meds and it doesn't control it as well as > > it controls carcinoid syndrome). > > > > > > 2 months ago I started calcium channel blocker (Norvasc) to help > > control exertion intolerance and exertion triggered tachycardia and > > hypertension - amazing improvement in all " carcinoid symptoms " . > > (calcium channnel blockers don't do a thing for carcinoid...) > > > > > > I traveled 420 miles each way for Thanksgiving this year with NO > > fatigue. Then I traveled a total of 1200 miles over Christmas - a > > three leg trip to my inlaws, then my parents, then home - NO fatigue. > > > > > > My husband and I have been amazed and shocked at this turn of > > events. I have been weaning off the sandostatin - as I do every year > > around this time for an octreoscan to hunt for the carcinoid tumor - > > I feel so good I cannot believe it. The calcium channel blocker is > > controlling all my symptoms so much better than the sandostatin - > > which prompted me to dig a little deeper. > > > > > > So, the facial flushing is what has kept my docs lookimng for the > > carcinoid - but I am beginning to think that the visible adrenal > > tumor may be the culprit rather than the invisible carcinoid tumor... > > > > > > Any thoughts? > > > > > > I'd be especially interested in hearing from anyone who has facial > > flushing, or women who have hirsutism (excess facial hair that is > > stiff and dark - like a man's whiskers) or women who have had > > uncontrollable pre-eclampsia in pregnancy due to hyperaldosteronism... > > > > > > Thanks! > > > > > > Joyce in Cinci > > > > Dear Joyce, > > > > Just posted about facial sweats. I had terrible facial sweats when > > my PA returned about 6 months ago after removal of left adrenal > > gland.I found an article that lists facial sweats as a symptom - > > http://www.emedicine.com/ped/topic1056.htm. Also, my daughter has > > had facial hair and chest hair since her early 20's. She also had pre- > > eclampsia during pregnancy. She takes 200mg spiro a day for about 20 > > years and it has controlled these symptoms. Interesting coincidence > > with the spiro. > > > > Good Luck, Jan > > > > > > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Search. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 19, 2008 Report Share Posted January 19, 2008 Assume you have been tested for pheochromocytoma as well? Classically PA gets better during pregnancy. I have never heard of treating an undiagnosed carcinoid with sandostatin. I would call this bad judgement. Sounds like you may have an orthostatic hypotension problem. Have you been tested for this. There is a good autonomic insufficiency site in our links as I recall. You need to have a blood renin and aldosterone checked. I know an excellent Endo in Lexington who could likely get you figured out. Can you drive down there? On Jan 18, 2008, at 7:00 PM, <carcinoidnews@...> wrote: > Symptoms: > > > > > > > > Palpitations > > > > Sinus tachycardia > > > > Fatigue, Fatigue, Fatigue - and more fatigue!! > > > > facial flushing > > > > hirsutism (I have a goatee that rival's my husband's) > > > > increased thirst > > > > increased urination > > > > Pre-eclampsia in pregnancy that hit like a runaway freight train > > > and couldn't be controlled - labile hypertension during pre- > eclampsia > > > > > > > > Symptoms are triggered by exertion, eating - especially high > carb > > > foods or foods high in tyramine, AND by postural changes from > lying > > > down to sitting or standing - symptoms worsen when I am sitting or > > > standing for long periods of time. For last 8 years haven't > been able > > > to tolerate even ,ong car trips - even with my husband driving > - jsut > > > as a passenger, severe fatigue and mild to moderate flushing from > > > sitting upright for several hours. (early work-ups for orthostatic > > > conditions were negative - but I definitely have tachycardia when > > > rising from a lying down position- much improved on calcium > channel > > > blockers) > > > > > > > > Symptoms: > > > > Hypertension, fatigue, etc moderately controlled with > sandostatin > > > (a synthetic version of a natural hormone somatostatin) that > acts as > > > a giant " off-switch " for endocrine systems (and I have recently > > > learned that it can control hyperaldosteronism - but it doesn't > > > control it as well as other meds and it doesn't control it as > well as > > > it controls carcinoid syndrome). > > > > > > > > 2 months ago I started calcium channel blocker (Norvasc) to help > > > control exertion intolerance and exertion triggered tachycardia > and > > > hypertension - amazing improvement in all " carcinoid symptoms " . > > > (calcium channnel blockers don't do a thing for carcinoid...) > > > > > > > > I traveled 420 miles each way for Thanksgiving this year with NO > > > fatigue. Then I traveled a total of 1200 miles over Christmas - a > > > three leg trip to my inlaws, then my parents, then home - NO > fatigue. > > > > > > > > My husband and I have been amazed and shocked at this turn of > > > events. I have been weaning off the sandostatin - as I do every > year > > > around this time for an octreoscan to hunt for the carcinoid > tumor - > > > I feel so good I cannot believe it. The calcium channel blocker is > > > controlling all my symptoms so much better than the sandostatin - > > > which prompted me to dig a little deeper. > > > > > > > > So, the facial flushing is what has kept my docs lookimng for > the > > > carcinoid - but I am beginning to think that the visible adrenal > > > tumor may be the culprit rather than the invisible carcinoid > tumor... > > > > > > > > Any thoughts? > > > > > > > > I'd be especially interested in hearing from anyone who has > facial > > > flushing, or women who have hirsutism (excess facial hair that is > > > stiff and dark - like a man's whiskers) or women who have had > > > uncontrollable pre-eclampsia in pregnancy due to > hyperaldosteronism... > > > > > > > > Thanks! > > > > > > > > Joyce in Cinci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Hi! Yes - the pheo was tested for extensively several years ago - the NIH even did some testing for my docs - it was (then ) a new test - if I remember right it was for metanephrines and normetanephrines... all tests conclusively negative. Nobody could figure out the source of the sinus tachycardia and the labile hypertension (which pre-pregnancy was mild). Fairly extensive testing for orthostatic type problems as well - on Tilt table my HR went up but my BP went up as well too - they were looking for a drop in BP. I definitely don't present a classical picture of Conn's - which is why my left adrenal tumor has been sitting there without looking into it. My hypertension has been only labile - BUT I have been on boatloads of drugs for the sinus tach - which would also help lower BP - PLUS I have an ultra low sodium diet - I probably average around 1000mg a day. Anyway, my mom had hypertension ever since I was little (as did her mom- early onset of hypertension in 30's despite not being overweight, not being sedentary, not smoking, etc) so I grew up with my mom cooking without salt etc - I don't really like the taste of salt - I rarely eat any processed food. We figured out a connection between processed food and my extreme post-prandial fatigue symptoms a few years ago and cutting out processed foods and rarely eating restaurant food really helped improve my symptoms as well.... I also have this weird symptom of fluid weight gain without edema - docs were quite stumped when this first started happening in pregnancy - I would put on 5-10 pounds a day in fluid - no clinical edema - then it would diurese away. They actually put me in the hospital to verify this because one of the docs in the group thought I was just a nervous first-time mom. I still have the fluid weight gain without edema thing going on - but it always goes away when I lie down for awhile - I pee it all off. And it's not nearly as bad as the fluid weight gains in pregnancy. I have also been tested for some rare kind of inheritied swelling problem (angioedema I think) - my mom who has severe difficult to control hypertension and now has diabetes and coronary artery disease (and just had 2 heart attacks at age 65) - she swells like that too. Fluid weight gain without edema. So my onco is doing a complete preliminary workup for the Conn's - if this turns out negative then I would definitely be interested in seeing your endo in Lexington-much closer than my carcinoid experts in N.Y. and La. !! Yes, you are also right that carcinoid is VERY RARELY ever treated with sando without a confirmed histopath dx - but that's mainly because it usually isn't diagnosed until its metastatic and incurable - it's rare to find the tumors prior to metastasis - and also rare to have syndrome without mets. I won't bore the group with the whys of that. My urine 5-HIAA tests have consistent mild elevations (which decrease to low normal on sando) and when I first started the octreoscans- I had such an improvement in symptoms that my doc conferred with the carcinoid experts and decided it was worth a trial response to sando... - very positive repsonse but still struggle with fatigue issues and am limited in regards to exertion, stamina, etc - but sando took me from bed-ridden to having a life and even being able to return to work part-time so all docs concurred that it was worth staying on the sando while we tried to figure things out. I have been simply took sick tolive without it - fatgie so bad that if you put a gun to my head I couldn';t get up. Fall asleep in broad daylight when I don't want to, but cannot help it. (not a sudden narcolepsy thing, just overwhelming sleepiness and fatigue). So the final consensus was that I probably have a small benign carcinoid that isn't big enough (needs to be 1cm or greater) to show up on o-scan and that the sando may keep it from growing any larger so we may never find it. And I couldn't deal with the continual diagnostic process anymore. I got to the point where if the meds controlled it, I didn't care what it was. I had a young special needs daughter (issues from being born 12 weeks early), I was worried that if I didn't return to practice soon, I would reach a point where I had been out so long I wouldn't be able to go back (I am a vet), and I just wanted a life again. I was tired of imitating a lab rat, REALLY tired of having specialists take on my case only to say " you are a really interesting case... but I have no idea what is wrong with you " . I was so sick without the sando and so much better with it that my docs agreed to take a break from the diagnostics with the exception of yearly follow-up testing to look for the tumor (and monthly checkups with my sando treatments). But in the seven years on sando, I haven't been back on calcium channel blockers until a couple months ago - I went off all drugs during pregnancy, then after went on beta-blockers becuase it was safer for nursing - we never really thought there might be a connection with the calcium channel blockers. And now that I am off the sando completely, I am drinking and peeing like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times in the middle of the night and also very thirsty in the middle of the night... Anyway, thank you all so much for the responses - am waiting on the blood results which were just drawn Friday, and I have a urine jug to fill up tomorrow and take in on Tuesday, so within a couple weeks I should at least have some pre-lim answers. And, Dr. Grimm, thanks so much - I will definitely be asking you for the Endo contact in Lexington if this doesn't pan out. Also, my thanks to the group for listening and answering - I am putting the cart before the horse here, but I was reluctant to " open pandora's box " with respect to going on another round of diagnostics, and potentially more wild goose chases. I will definitely keep you guys posted on the test results- And if negative I apologize in advance for wasting your time! And I won't write such long emails anymore!! Sincerely, Joyce in Cinci ---- Clarence Grim <lowerbp2@...> wrote: > Assume you have been tested for pheochromocytoma as well? > > > Classically PA gets better during pregnancy. > > I have never heard of treating an undiagnosed carcinoid with > sandostatin. I would call this bad judgement. > > Sounds like you may have an orthostatic hypotension problem. Have you > been tested for this. There is a good autonomic insufficiency site > in our links as I recall. > > You need to have a blood renin and aldosterone checked. I know an > excellent Endo in Lexington who could likely get you figured out. > Can you drive down there? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 " And now that I am off the sando completely, I am drinking and peeing like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times in the middle of the night and also very thirsty in the middle of the night... " That is a symptom of PA. Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, especially, likes to have everyone write his or her story and put it in the files section of the group. You can see a few other stories there. I hope you will consider doing that. Even if you don't have PA, we all learn from the posts of others. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@... [snip]And now that I am off the sando completely, I am drinking and peeing like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times in the middle of the night and also very thirsty in the middle of the night... [snip]Also, my thanks to the group for listening and answering - I am putting the cart before the horse here, but I was reluctant to " open pandora's box " with respect to going on another round of diagnostics, and potentially more wild goose chases. I will definitely keep you guys posted on the test results- And if negative I apologize in advance for wasting your time! And I won't write such long emails anymore!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 This sounds like a problem due to PA. Has your K ever been low? CE Grim MS, MD High Blood Pressure Consulting Clnical Professor of Medicine Medical Colege of Wisconsin Board certified in Internal Med, Geritrics and Hypertension. Interests: The effect of recent evolutionary forces on high blood pressure in human populations. On Jan 20, 2008, at 1:29 PM, Valarie wrote: > " And now that I am off the sando completely, I am drinking and > peeing like a racehorse!! - I was PU/PD before sando but not this > bad - I am now up 1-2 times in the middle of the night and also > very thirsty in the middle of the night... " > > That is a symptom of PA. > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, > especially, likes to have everyone write his or her story and put > it in the files section of the group. You can see a few other > stories there. I hope you will consider doing that. > > Even if you don't have PA, we all learn from the posts of others. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of > carcinoidnews@... > > [snip]And now that I am off the sando completely, I am drinking and > peeing like a racehorse!! - I was PU/PD before sando but not this > bad - I am now up 1-2 times in the middle of the night and also > very thirsty in the middle of the night... > > [snip]Also, my thanks to the group for listening and answering - I > am putting the cart before the horse here, but I was reluctant to > " open pandora's box " with respect to going on another round of > diagnostics, and potentially more wild goose chases. I will > definitely keep you guys posted on the test results- And if > negative I apologize in advance for wasting your time! And I won't > write such long emails anymore!! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 Years ago- back in college when my childhood symptoms got worse (had been diagnosed tas " hypoglycemic due to postt-prandial/poast-carb intolerance - but without the benefit of a glucose tolerance test " , I went to the student clinic (which I now affectionately refer to as the student quack shack I had some numbness and tingling in my hands/forearms - and I think I was a bit PU/PD then as well, - my doc said my potassium was low and to eat lots of bananas... So I have always eaten a diet high in potassium since then - bananas and spinach especially... Never really thought about it again til talking to my onco Fri - and I mentioned this - should'a seen the look on his face! haven't had a low K+ since - but that is being checked now too... Joyce in Cinci ---- Grim Clarence <lowerbp2@...> wrote: > This sounds like a problem due to PA. Has your K ever been low? > > > CE Grim MS, MD > High Blood Pressure Consulting > > Clnical Professor of Medicine Medical Colege of Wisconsin > > Board certified in Internal Med, Geritrics and Hypertension. > > Interests: The effect of recent evolutionary forces on high blood > pressure in human populations. > > > > > On Jan 20, 2008, at 1:29 PM, Valarie wrote: > > > " And now that I am off the sando completely, I am drinking and > > peeing like a racehorse!! - I was PU/PD before sando but not this > > bad - I am now up 1-2 times in the middle of the night and also > > very thirsty in the middle of the night... " > > > > That is a symptom of PA. > > > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, > > especially, likes to have everyone write his or her story and put > > it in the files section of the group. You can see a few other > > stories there. I hope you will consider doing that. > > > > Even if you don't have PA, we all learn from the posts of others. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of > > carcinoidnews@... > > > > [snip]And now that I am off the sando completely, I am drinking and > > peeing like a racehorse!! - I was PU/PD before sando but not this > > bad - I am now up 1-2 times in the middle of the night and also > > very thirsty in the middle of the night... > > > > [snip]Also, my thanks to the group for listening and answering - I > > am putting the cart before the horse here, but I was reluctant to > > " open pandora's box " with respect to going on another round of > > diagnostics, and potentially more wild goose chases. I will > > definitely keep you guys posted on the test results- And if > > negative I apologize in advance for wasting your time! And I won't > > write such long emails anymore!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 I will definitely do that if i come back positive. Plus, I will now go and read some of those stories. Thanks! ---- Valarie <val@...> wrote: > " And now that I am off the sando completely, I am drinking and peeing like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times in the middle of the night and also very thirsty in the middle of the night... " > > That is a symptom of PA. > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, especially, likes to have everyone write his or her story and put it in the files section of the group. You can see a few other stories there. I hope you will consider doing that. > > Even if you don't have PA, we all learn from the posts of others. > > Val > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of carcinoidnews@... > > [snip]And now that I am off the sando completely, I am drinking and peeing like a racehorse!! - I was PU/PD before sando but not this bad - I am now up 1-2 times in the middle of the night and also very thirsty in the middle of the night... > > [snip]Also, my thanks to the group for listening and answering - I am putting the cart before the horse here, but I was reluctant to " open pandora's box " with respect to going on another round of diagnostics, and potentially more wild goose chases. I will definitely keep you guys posted on the test results- And if negative I apologize in advance for wasting your time! And I won't write such long emails anymore!! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 I think everyone would appreciate your story, even if you don't end up having PA. Trying to track down these related conditions is like trying to catch a fast mouse, bare-handed. It helps to read others' stories. Val -----Original Message----- From: carcinoidnews@... [mailto:carcinoidnews@...] I will definitely do that if i come back positive. Plus, I will now go and read some of those stories. Thanks! ---- Valarie <val@...> wrote: > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, especially, likes to have everyone write his or her story and put it in the files section of the group. You can see a few other stories there. I hope you will consider doing that. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 I will start working on it while waiting for test results then! I cracked up over the mouse description - that was great! Joyce in Cinci ---- Valarie <val@...> wrote: > I think everyone would appreciate your story, even if you don't end up having PA. Trying to track down these related conditions is like trying to catch a fast mouse, bare-handed. It helps to read others' stories. > > Val > > -----Original Message----- > From: carcinoidnews@... [mailto:carcinoidnews@...] > > I will definitely do that if i come back positive. Plus, I will now go and read some of those stories. Thanks! > > ---- Valarie <val@...> wrote: > > > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, especially, likes to have everyone write his or her story and put it in the files section of the group. You can see a few other stories there. I hope you will consider doing that. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 You almost certainly have PA. Read my paper on the evolution of PA. Not sure what you mean by PU/PD. CE Grim MS, MD High Blood Pressure Consulting Clnical Professor of Medicine Medical Colege of Wisconsin Board certified in Internal Med, Geritrics and Hypertension. Interests: The effect of recent evolutionary forces on high blood pressure in human populations. On Jan 20, 2008, at 3:01 PM, carcinoidnews@... wrote: > Years ago- back in college when my childhood symptoms got worse > (had been diagnosed tas " hypoglycemic due to postt-prandial/poast- > carb intolerance - but without the benefit of a glucose tolerance > test " , I went to the student clinic (which I now affectionately > refer to as the student quack shack I had some numbness and > tingling in my hands/forearms - and I think I was a bit PU/PD then > as well, - my doc said my potassium was low and to eat lots of > bananas... > > So I have always eaten a diet high in potassium since then - > bananas and spinach especially... > > Never really thought about it again til talking to my onco Fri - > and I mentioned this - should'a seen the look on his face! > haven't had a low K+ since - but that is being checked now too... > > Joyce in Cinci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2008 Report Share Posted January 20, 2008 I remember the hapless nephrologist who Dx'd my PA by accident of not having heard the American water cooler gossip to " forget about it - so rare " because of doing internship in UK. He ran the a/r series - blood and urine - only. He told me to eat bananas, etc. too. Later when my K kept dropping he'd done more research (in UK) and said " I was wrong - with PA dietary K won't help unless you block the aldo recptor. " Ignored Na whose dietary content does matter, and calcium/magnesium imbalances (high and low respectively), forgot the other electrolytes in all the excitement becoming the County Hospital's " expert on hypertension " for having found a 'rare' case. Even K-Dur wasn't much help past the 3-4 hrs it's designed to act. Other band-aids that were useless, but doctors continued Rx'ing - included clonidine, nifedipine, etc. Short-term fixes that rebounded BP worse. No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect. Months lost. Still didn't give aldo blocker or say a word about Na in my diet. 4 more years, into LVH and stage 4 PA. Unfortunately this is standard institutional behavior. Ask 'em for dexamethasone for quick BP & K fix, and aldactone for a couple weeks while you measure K often and record your BP 3-4xday and find a doctor who knows PA. IMO Dave carcinoidnews@... wrote: > > Years ago- back in college when my childhood symptoms got worse (had > been diagnosed tas " hypoglycemic due to postt-prandial/poast-carb > intolerance - but without the benefit of a glucose tolerance test " , I > went to the student clinic (which I now affectionately refer to as the > student quack shack I had some numbness and tingling in my > hands/forearms - and I think I was a bit PU/PD then as well, - my doc > said my potassium was low and to eat lots of bananas... > > So I have always eaten a diet high in potassium since then - bananas > and spinach especially... > > Never really thought about it again til talking to my onco Fri - and I > mentioned this - should'a seen the look on his face! > haven't had a low K+ since - but that is being checked now too... > > Joyce in Cinci > > ---- Grim Clarence <lowerbp2@... <mailto:lowerbp2%40mac.com>> wrote: > > This sounds like a problem due to PA. Has your K ever been low? > > > > > > CE Grim MS, MD > > High Blood Pressure Consulting > > > > Clnical Professor of Medicine Medical Colege of Wisconsin > > > > Board certified in Internal Med, Geritrics and Hypertension. > > > > Interests: The effect of recent evolutionary forces on high blood > > pressure in human populations. > > > > > > > > > > On Jan 20, 2008, at 1:29 PM, Valarie wrote: > > > > > " And now that I am off the sando completely, I am drinking and > > > peeing like a racehorse!! - I was PU/PD before sando but not this > > > bad - I am now up 1-2 times in the middle of the night and also > > > very thirsty in the middle of the night... " > > > > > > That is a symptom of PA. > > > > > > Joyce, we all like to keep track of everyone's " stories. " Dr. Grim, > > > especially, likes to have everyone write his or her story and put > > > it in the files section of the group. You can see a few other > > > stories there. I hope you will consider doing that. > > > > > > Even if you don't have PA, we all learn from the posts of others. > > > > > > Val > > > > > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > > > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40>] On Behalf Of > > > carcinoidnews@... <mailto:carcinoidnews%40fuse.net> > > > > > > [snip]And now that I am off the sando completely, I am drinking and > > > peeing like a racehorse!! - I was PU/PD before sando but not this > > > bad - I am now up 1-2 times in the middle of the night and also > > > very thirsty in the middle of the night... > > > > > > [snip]Also, my thanks to the group for listening and answering - I > > > am putting the cart before the horse here, but I was reluctant to > > > " open pandora's box " with respect to going on another round of > > > diagnostics, and potentially more wild goose chases. I will > > > definitely keep you guys posted on the test results- And if > > > negative I apologize in advance for wasting your time! And I won't > > > write such long emails anymore!! > > > > > > [ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 Read just the snippets I left of Dave's message. Do these doctors never read? Dave, how long ago did you have the surgery? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Dave I remember the hapless nephrologist who Dx'd my PA by accident He told me to eat bananas, etc. too. Ignored Na whose dietary Even K-Dur wasn't much help past the 3-4 hrs it's designed to act. doctors continued Rx'ing - included clonidine, nifedipine, etc. No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect. Months lost. Still didn't give aldo blocker or say a word about Na in my diet. 4 more years, into LVH and stage 4 PA. Unfortunately this is standard institutional behavior. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2008 Report Share Posted January 21, 2008 ---- Grim Clarence <lowerbp2@...> wrote: > You almost certainly have PA. Read my paper on the evolution of PA. > > Not sure what you mean by PU/PD. OOPS! That's the vet in me talking - that's the abbreviation we use for polyuric/polydipsic eg increased thirst / increased urination. Read the paper - it's very interesting - and makes a lot of sense. Joyce in Cinci Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2008 Report Share Posted January 22, 2008 Valarie wrote: > > Read just the snippets I left of Dave's message. Do these doctors never > read? Dave, how long ago did you have the surgery? > Dec 99 > > Val > > From: hyperaldosteronism > <mailto:hyperaldosteronism%40> > [mailto:hyperaldosteronism > <mailto:hyperaldosteronism%40>] On Behalf Of Dave > > I remember the hapless nephrologist who Dx'd my PA by accident > > He told me to eat bananas, etc. too. > > Ignored Na whose dietary > > Even K-Dur wasn't much help past the 3-4 hrs it's designed to act. > > doctors continued Rx'ing - included clonidine, nifedipine, etc. > > No AVS, and only a 1mm bump - out it came w/adenalectomy, to no effect. > > Months lost. > > Still didn't give aldo blocker or say a word about Na in my diet. > > 4 more years, into LVH and stage 4 PA. > > Unfortunately this is standard institutional behavior. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Congratulations! You are in for a world of joy! As for walking, don't sweat it. My daughter didn't walk until she was 4, but she was the fastest commando crawler ever! As for talking, he's a boy, they're usually a little later anyway. It will come. Welcome aboard! Eleanor _____ From: [mailto: ] On Behalf Of mreid518 Sent: Wednesday, October 08, 2008 12:26 PM Subject: new to group Hello!! My name is Miriam and I have been in the group for a couple of weeeks and didn't know what to say. I have a cousin, Jayden, whom we love so much!!!!!!!!!!! He has traditional trisomy 21 and was born with a heart defect but happy to say that after he had his surgery he is doing wonderful now. He is two and very active. He is in early intervention and it seems to be helping but he still doesn't walk or speak any words yet. I joined the group so that I can learn everything I can to help me to better understand the things he may go through. Thank you for having me and I am willing to answer any questions if any. I would post a picture once I fiqure out how. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Ditto on walking.... didn't walk until she was over 3 (although the PT said she could, chose not to, LOL) She'd take a couple steps, but didn't actually walk until the day she figured out how to stand up from a sit on the floor.... she got herself up, and it was like a light went on... " Oh, I'm standing in the middle of the room, so I guess I should just walk over to the couch " That was it, and it wasn't long before we couldn't keep up with her :-) You will likely find that our experiences with our children with DS are both similar and different from each other.... although we all share the extra chromosome, our children have wonderful and different personalities, abilities, and needs. So, you will learn from reading posts, but know that what is happening with other children may or may not be in store for your cousin :-) Luckily, if you have questions, there will be many who will be able to help because they too have gone there too, so post away with your concerns! is really a blessing to our family... she's funny, caring, sweet, smart and opinionated. She's in 5th grade now, included at our neighborhood school, and is (sadly) starting to turn in to a typical tween girl.... full of her own opinions and is not afraid to tell anyone what they are. She's a computer game addict, and has been downloading free games from the internet for years now... we finally have software in place to prevent this, but we are proud that she figured in out :-) 's in Girl Scouts with her friends from school, and pretty much does what her sisters do, though on a smaller scale.... they each participate in many activities and love being busy, where likes to come home and relax in her room and read a book, or help me fix dinner, rather than head to the soccer field. Enjoy your baby cousin... he's lucky to have you in his life! , mom to (12), (10 DS), and Sammy (9) Eleanor Green wrote: > > Congratulations! You are in for a world of joy! > > As for walking, don't sweat it. My daughter didn't walk until she was > 4, but > she was the fastest commando crawler ever! As for talking, he's a boy, > they're usually a little later anyway. It will come. > > Welcome aboard! > > Eleanor > > _____ > > From: <mailto:%40> > [mailto: > <mailto:%40>] On Behalf > Of mreid518 > Sent: Wednesday, October 08, 2008 12:26 PM > <mailto:%40> > Subject: new to group > > Hello!! My name is Miriam and I have been in the group for a couple of > weeeks and didn't know what to say. I have a cousin, Jayden, whom we > love so much!!!!!!!!!!! He has traditional trisomy 21 and was born > with a heart defect but happy to say that after he had his surgery he > is doing wonderful now. He is two and very active. He is in early > intervention and it seems to be helping but he still doesn't walk or > speak any words yet. I joined the group so that I can learn everything > I can to help me to better understand the things he may go through. > Thank you for having me and I am willing to answer any questions if > any. I would post a picture once I fiqure out how. > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 Who makes the superfoods?KooLarryOn Fri, Jul 2, 2010 at 6:47 PM, <eradin0114@...> wrote:  Hello all..I just joined this group...Have made a Vita Mix machine for a few years but have not used it extensively. Recently became interested in superfoods/raw foods and it seems that the Vitamix is the ideal tool. I have purchased maca, hemp seed, coconut oil, coconut water, aloe vera juice, spirulina, bee pollen, cacao and goji berries. Any suggestions on putting these together in a tasty fashion? Also, is the $50 Vitamix cookbook worth the money? Perhaps I can find a better value right here within this group. Thanks. Elaine Radin 901.573.5454 - Cell 901.767.0686 - Home 231 Cloister Green Lane Memphis, TN 38120 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2010 Report Share Posted July 2, 2010 I got the superfoods from Whole Foods or ordered from Vitacost. Maca and Cacao made by Navitas. Hemp seed from Nutiva. Goji berries from Natierra. Spirulina from Nutraceutical Sciences. Also highly recommended was Klamath Lake blue/green algae. Elaine Radin Re: New to group Who makes the superfoods? KooLarry On Fri, Jul 2, 2010 at 6:47 PM, <eradin0114aol> wrote: Hello all..I just joined this group...Have made a Vita Mix machine for a few years but have not used it extensively. Recently became interested in superfoods/raw foods and it seems that the Vitamix is the ideal tool. I have purchased maca, hemp seed, coconut oil, coconut water, aloe vera juice, spirulina, bee pollen, cacao and goji berries. Any suggestions on putting these together in a tasty fashion? Also, is the $50 Vitamix cookbook worth the money? Perhaps I can find a better value right here within this group. Thanks. Elaine Radin 901.573.5454 - Cell 901.767.0686 - Home 231 Cloister Green Lane Memphis, TN 38120 Quote Link to comment Share on other sites More sharing options...
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