Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 HI. Just curious what the treatment is for that? I assume only medication for one cannot live without both adrenals I think.... From: constellationmike <hohnka@...> Subject: Re: ER Questions hyperaldosteronism Date: Wednesday, April 1, 2009, 9:33 PM Hi all, I saw Dr Ball at Hopkins last year. My primary care Dr sent me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . I was very impressed with the facility and with how much time he spent with me. He and his Fellow were with me for about 2 hours. He went over my entire history, looked at all of the previous blood work, saline loading results and 24 hour urine collection results. He called me 2 weeks later to discuss my CT scans. He confirmed the diagnosis and recommended that I see an Endocrinologist regularly. He offered to see me regularly, but it is 4 hrs from my home. All in all I was happy with my experience and would recommend him to others.. Mike > > someone here has done Hopkins and someone NIH. > > There is a genetic test for familial PA. See my article. > > People also go to ER include irregular heart beats, severe muscle cramps, heart failure. > > > Just tell ER people you have PA and to look it up. > > > > > Clarence E. Grim, BS, MS, MD > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " <shahall@... >: > > > >I'm afraid this won't help you much but my personal answers are in CAPS below: > > > >Read more old files/messages. Still not easily finding info I'm seeking for my particular concerns. If the following questions related to ER visits, etc. are redundant - kindly direct me where to look. > > > >FYI - origin of my current questions is my suspected diagnosis switching between familial hypokalemic periodic paralysis and PA. My symptoms/labs were suggestive of both, inconclusive for either. To determine a definitive diagnosis, I was instructed, by physicians suspecting familial HPP, to report to the ER when I believed I was symptomatic for HPP with directives from them for tests (including PA tests) to be performed, how to be managed while in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, sometimes not. If they had, my physicians may have had information they needed to pin down a definitive diagnosis sooner. Again, thanks for time/consideration reading/replying: > > > >1. Assuming individuals with PA have varied experiences/ expressions of the disease, what is TYPICALLY meant by the terms " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? Details? > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > >3. GENERALLY, why do individuals with PA seek emergency services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > >4. SPECIFICALLY, when should individuals with PA seek emergency services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > >6. Excluding Dr. Grim's article, are there data sheets available for ER visits? If not, are there guidelines a person with > >PA should advocate for to ER staff during ER visits (such as protocols for using potassium lowering IV fluids, epinepherine, etc NOT THAT I KNOW OF > >) Details? > > > >And two additional questions: > > > >7. Any data sheets available for diagnostic tests for PA? If not, what diagnostic tests and testing schedule should be followed? What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- surgical treatment of PA? Any clinitian preferences at either? MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 HI. Just curious what the treatment is for that? I assume only medication for one cannot live without both adrenals I think.... From: constellationmike <hohnka@...> Subject: Re: ER Questions hyperaldosteronism Date: Wednesday, April 1, 2009, 9:33 PM Hi all, I saw Dr Ball at Hopkins last year. My primary care Dr sent me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . I was very impressed with the facility and with how much time he spent with me. He and his Fellow were with me for about 2 hours. He went over my entire history, looked at all of the previous blood work, saline loading results and 24 hour urine collection results. He called me 2 weeks later to discuss my CT scans. He confirmed the diagnosis and recommended that I see an Endocrinologist regularly. He offered to see me regularly, but it is 4 hrs from my home. All in all I was happy with my experience and would recommend him to others.. Mike > > someone here has done Hopkins and someone NIH. > > There is a genetic test for familial PA. See my article. > > People also go to ER include irregular heart beats, severe muscle cramps, heart failure. > > > Just tell ER people you have PA and to look it up. > > > > > Clarence E. Grim, BS, MS, MD > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " <shahall@... >: > > > >I'm afraid this won't help you much but my personal answers are in CAPS below: > > > >Read more old files/messages. Still not easily finding info I'm seeking for my particular concerns. If the following questions related to ER visits, etc. are redundant - kindly direct me where to look. > > > >FYI - origin of my current questions is my suspected diagnosis switching between familial hypokalemic periodic paralysis and PA. My symptoms/labs were suggestive of both, inconclusive for either. To determine a definitive diagnosis, I was instructed, by physicians suspecting familial HPP, to report to the ER when I believed I was symptomatic for HPP with directives from them for tests (including PA tests) to be performed, how to be managed while in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, sometimes not. If they had, my physicians may have had information they needed to pin down a definitive diagnosis sooner. Again, thanks for time/consideration reading/replying: > > > >1. Assuming individuals with PA have varied experiences/ expressions of the disease, what is TYPICALLY meant by the terms " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? Details? > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > >3. GENERALLY, why do individuals with PA seek emergency services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > >4. SPECIFICALLY, when should individuals with PA seek emergency services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > >6. Excluding Dr. Grim's article, are there data sheets available for ER visits? If not, are there guidelines a person with > >PA should advocate for to ER staff during ER visits (such as protocols for using potassium lowering IV fluids, epinepherine, etc NOT THAT I KNOW OF > >) Details? > > > >And two additional questions: > > > >7. Any data sheets available for diagnostic tests for PA? If not, what diagnostic tests and testing schedule should be followed? What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- surgical treatment of PA? Any clinitian preferences at either? MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 correct. surgery is ruled out for bilateral dysfunction. On Apr 2, 2009, at 7:07 PM, Jay Man wrote: > HI. Just curious what the treatment is for that? I assume only > medication for one cannot live without both adrenals I think.... > > > > From: constellationmike <hohnka@...> > Subject: Re: ER Questions > hyperaldosteronism > Date: Wednesday, April 1, 2009, 9:33 PM > > Hi all, > > I saw Dr Ball at Hopkins last year. My primary care Dr sent > me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . > I was very impressed with the facility and with how much time he spent > with me. He and his Fellow were with me for about 2 hours. He went > over my entire history, looked at all of the previous blood work, > saline loading results and 24 hour urine collection results. He called > me 2 weeks later to discuss my CT scans. He confirmed the diagnosis > and recommended that I see an Endocrinologist regularly. He offered to > see me regularly, but it is 4 hrs from my home. All in all I was happy > with my experience and would recommend him to others.. > > Mike > > > > > > someone here has done Hopkins and someone NIH. > > > > There is a genetic test for familial PA. See my article. > > > > People also go to ER include irregular heart beats, severe muscle > cramps, heart failure. > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@... >: > > > > > >I'm afraid this won't help you much but my personal answers are in > CAPS below: > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions related > to ER visits, etc. are redundant - kindly direct me where to look. > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including PA > tests) to be performed, how to be managed while in the ER, fluids/meds > to avoid etc. Sometimes ER staff complied, sometimes not. If they had, > my physicians may have had information they needed to pin down a > definitive diagnosis sooner. Again, thanks for time/consideration > reading/replying: > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE > ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW > SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, > FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I > WOULDN'T CALL THIS AN EPISODE. > > > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? > Details? > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > >3. GENERALLY, why do individuals with PA seek emergency services? > PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS > OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual > with PA be hospitalized for PA? I NEVER HAVE. > > > > > >6. Excluding Dr. Grim's article, are there data sheets available > for ER visits? If not, are there guidelines a person with > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > >) Details? > > > > > >And two additional questions: > > > > > >7. Any data sheets available for diagnostic tests for PA? If not, > what diagnostic tests and testing schedule should be followed? What > tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN > LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- > surgical treatment of PA? Any clinitian preferences at either? MAYBE > DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 correct. surgery is ruled out for bilateral dysfunction. On Apr 2, 2009, at 7:07 PM, Jay Man wrote: > HI. Just curious what the treatment is for that? I assume only > medication for one cannot live without both adrenals I think.... > > > > From: constellationmike <hohnka@...> > Subject: Re: ER Questions > hyperaldosteronism > Date: Wednesday, April 1, 2009, 9:33 PM > > Hi all, > > I saw Dr Ball at Hopkins last year. My primary care Dr sent > me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . > I was very impressed with the facility and with how much time he spent > with me. He and his Fellow were with me for about 2 hours. He went > over my entire history, looked at all of the previous blood work, > saline loading results and 24 hour urine collection results. He called > me 2 weeks later to discuss my CT scans. He confirmed the diagnosis > and recommended that I see an Endocrinologist regularly. He offered to > see me regularly, but it is 4 hrs from my home. All in all I was happy > with my experience and would recommend him to others.. > > Mike > > > > > > someone here has done Hopkins and someone NIH. > > > > There is a genetic test for familial PA. See my article. > > > > People also go to ER include irregular heart beats, severe muscle > cramps, heart failure. > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@... >: > > > > > >I'm afraid this won't help you much but my personal answers are in > CAPS below: > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions related > to ER visits, etc. are redundant - kindly direct me where to look. > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including PA > tests) to be performed, how to be managed while in the ER, fluids/meds > to avoid etc. Sometimes ER staff complied, sometimes not. If they had, > my physicians may have had information they needed to pin down a > definitive diagnosis sooner. Again, thanks for time/consideration > reading/replying: > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE > ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW > SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, > FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I > WOULDN'T CALL THIS AN EPISODE. > > > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? > Details? > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > >3. GENERALLY, why do individuals with PA seek emergency services? > PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS > OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual > with PA be hospitalized for PA? I NEVER HAVE. > > > > > >6. Excluding Dr. Grim's article, are there data sheets available > for ER visits? If not, are there guidelines a person with > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > >) Details? > > > > > >And two additional questions: > > > > > >7. Any data sheets available for diagnostic tests for PA? If not, > what diagnostic tests and testing schedule should be followed? What > tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN > LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- > surgical treatment of PA? Any clinitian preferences at either? MAYBE > DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Hi Mike What s Hopkins location is Dr Ball at? What is his speciality? I am trying to find a specialist close to Ontario Canada. Most of the endocrinoligsts here have a wait time of 5 months. AFter 2 years of searching for anwers I am my wits end and need to find a solution as soon as possible even if it means travlelling to the US From: constellationmike <hohnka@...> Subject: Re: ER Questions hyperaldosteronism Received: Wednesday, April 1, 2009, 10:33 PM Hi all, I saw Dr Ball at Hopkins last year. My primary care Dr sent me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . I was very impressed with the facility and with how much time he spent with me. He and his Fellow were with me for about 2 hours. He went over my entire history, looked at all of the previous blood work, saline loading results and 24 hour urine collection results. He called me 2 weeks later to discuss my CT scans. He confirmed the diagnosis and recommended that I see an Endocrinologist regularly. He offered to see me regularly, but it is 4 hrs from my home. All in all I was happy with my experience and would recommend him to others.. Mike > > someone here has done Hopkins and someone NIH. > > There is a genetic test for familial PA. See my article. > > People also go to ER include irregular heart beats, severe muscle cramps, heart failure. > > > Just tell ER people you have PA and to look it up. > > > > > Clarence E. Grim, BS, MS, MD > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " <shahall@... >: > > > >I'm afraid this won't help you much but my personal answers are in CAPS below: > > > >Read more old files/messages. Still not easily finding info I'm seeking for my particular concerns. If the following questions related to ER visits, etc. are redundant - kindly direct me where to look. > > > >FYI - origin of my current questions is my suspected diagnosis switching between familial hypokalemic periodic paralysis and PA. My symptoms/labs were suggestive of both, inconclusive for either. To determine a definitive diagnosis, I was instructed, by physicians suspecting familial HPP, to report to the ER when I believed I was symptomatic for HPP with directives from them for tests (including PA tests) to be performed, how to be managed while in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, sometimes not. If they had, my physicians may have had information they needed to pin down a definitive diagnosis sooner. Again, thanks for time/consideration reading/replying: > > > >1. Assuming individuals with PA have varied experiences/ expressions of the disease, what is TYPICALLY meant by the terms " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? Details? > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > >3. GENERALLY, why do individuals with PA seek emergency services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > >4. SPECIFICALLY, when should individuals with PA seek emergency services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > >6. Excluding Dr. Grim's article, are there data sheets available for ER visits? If not, are there guidelines a person with > >PA should advocate for to ER staff during ER visits (such as protocols for using potassium lowering IV fluids, epinepherine, etc NOT THAT I KNOW OF > >) Details? > > > >And two additional questions: > > > >7. Any data sheets available for diagnostic tests for PA? If not, what diagnostic tests and testing schedule should be followed? What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- surgical treatment of PA? Any clinitian preferences at either? MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________________ Connect with friends from any web browser - no download required. Try the new Canada Messenger for the Web BETA at http://ca.messenger../webmessengerpromo.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Hi Mike What s Hopkins location is Dr Ball at? What is his speciality? I am trying to find a specialist close to Ontario Canada. Most of the endocrinoligsts here have a wait time of 5 months. AFter 2 years of searching for anwers I am my wits end and need to find a solution as soon as possible even if it means travlelling to the US From: constellationmike <hohnka@...> Subject: Re: ER Questions hyperaldosteronism Received: Wednesday, April 1, 2009, 10:33 PM Hi all, I saw Dr Ball at Hopkins last year. My primary care Dr sent me to him for confirmation of my diagnosis. (Bilateral hyperplasia) . I was very impressed with the facility and with how much time he spent with me. He and his Fellow were with me for about 2 hours. He went over my entire history, looked at all of the previous blood work, saline loading results and 24 hour urine collection results. He called me 2 weeks later to discuss my CT scans. He confirmed the diagnosis and recommended that I see an Endocrinologist regularly. He offered to see me regularly, but it is 4 hrs from my home. All in all I was happy with my experience and would recommend him to others.. Mike > > someone here has done Hopkins and someone NIH. > > There is a genetic test for familial PA. See my article. > > People also go to ER include irregular heart beats, severe muscle cramps, heart failure. > > > Just tell ER people you have PA and to look it up. > > > > > Clarence E. Grim, BS, MS, MD > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " <shahall@... >: > > > >I'm afraid this won't help you much but my personal answers are in CAPS below: > > > >Read more old files/messages. Still not easily finding info I'm seeking for my particular concerns. If the following questions related to ER visits, etc. are redundant - kindly direct me where to look. > > > >FYI - origin of my current questions is my suspected diagnosis switching between familial hypokalemic periodic paralysis and PA. My symptoms/labs were suggestive of both, inconclusive for either. To determine a definitive diagnosis, I was instructed, by physicians suspecting familial HPP, to report to the ER when I believed I was symptomatic for HPP with directives from them for tests (including PA tests) to be performed, how to be managed while in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, sometimes not. If they had, my physicians may have had information they needed to pin down a definitive diagnosis sooner. Again, thanks for time/consideration reading/replying: > > > >1. Assuming individuals with PA have varied experiences/ expressions of the disease, what is TYPICALLY meant by the terms " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? Details? > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > >3. GENERALLY, why do individuals with PA seek emergency services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > >4. SPECIFICALLY, when should individuals with PA seek emergency services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > >6. Excluding Dr. Grim's article, are there data sheets available for ER visits? If not, are there guidelines a person with > >PA should advocate for to ER staff during ER visits (such as protocols for using potassium lowering IV fluids, epinepherine, etc NOT THAT I KNOW OF > >) Details? > > > >And two additional questions: > > > >7. Any data sheets available for diagnostic tests for PA? If not, what diagnostic tests and testing schedule should be followed? What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- surgical treatment of PA? Any clinitian preferences at either? MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________________ Connect with friends from any web browser - no download required. Try the new Canada Messenger for the Web BETA at http://ca.messenger../webmessengerpromo.php Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 The spiro is better for me as well. I would think they would take out the adrenal with the two adenomas and do an avs first------that one might be producing a rather substantial amount of hormones---Wish you the best let us know what's going on. From: constellationmike <hohnka@...> Subject: Re: ER Questions hyperaldosteronism Date: Thursday, April 2, 2009, 9:21 PM The treatment is....medication for the rest of my life. I've tried both spironolactone and inspra. I get many side effects from both medications. Currently on spiro because I can tolerate it a little better. In addition to the hyperplasia of both adrenals I have 2 adenomas on one of the glands. They didn't even recommend AVS. No point I guess. Just a CT every year for a few years. Mike > > > > someone here has done Hopkins and someone NIH. > > > > There is a genetic test for familial PA. See my article. > > > > People also go to ER include irregular heart beats, severe muscle cramps, heart failure. > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " <shahall@ >: > > > > > >I'm afraid this won't help you much but my personal answers are in CAPS below: > > > > > >Read more old files/messages. Still not easily finding info I'm seeking for my particular concerns. If the following questions related to ER visits, etc. are redundant - kindly direct me where to look. > > > > > >FYI - origin of my current questions is my suspected diagnosis switching between familial hypokalemic periodic paralysis and PA. My symptoms/labs were suggestive of both, inconclusive for either. To determine a definitive diagnosis, I was instructed, by physicians suspecting familial HPP, to report to the ER when I believed I was symptomatic for HPP with directives from them for tests (including PA tests) to be performed, how to be managed while in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, sometimes not. If they had, my physicians may have had information they needed to pin down a definitive diagnosis sooner. Again, thanks for time/consideration reading/replying: > > > > > >1. Assuming individuals with PA have varied experiences/ expressions of the disease, what is TYPICALLY meant by the terms " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? Details? > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > >3. GENERALLY, why do individuals with PA seek emergency services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > >6. Excluding Dr. Grim's article, are there data sheets available for ER visits? If not, are there guidelines a person with > > >PA should advocate for to ER staff during ER visits (such as protocols for using potassium lowering IV fluids, epinepherine, etc NOT THAT I KNOW OF > > >) Details? > > > > > >And two additional questions: > > > > > >7. Any data sheets available for diagnostic tests for PA? If not, what diagnostic tests and testing schedule should be followed? What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- surgical treatment of PA? Any clinitian preferences at either? MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Depends on how well u tolerate drugs and diet to control BP and K Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 2, 2009, at 10:09 PM, Jay Man <jndaqca2009@...> wrote: > The spiro is better for me as well. I would think they would take > out the adrenal with the two adenomas and do an avs first------that > one might be producing a rather substantial amount of hormones--- > Wish you the best let us know what's going on. > > > > From: constellationmike <hohnka@...> > Subject: Re: ER Questions > hyperaldosteronism > Date: Thursday, April 2, 2009, 9:21 PM > > The treatment is....medication for the rest of my life. I've tried > both spironolactone and inspra. I get many side effects from both > medications. Currently on spiro because I can tolerate it a little > better. In addition to the hyperplasia of both adrenals I have 2 > adenomas on one of the glands. They didn't even recommend AVS. No > point I guess. Just a CT every year for a few years. > > Mike > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > There is a genetic test for familial PA. See my article. > > > > > > People also go to ER include irregular heart beats, severe > muscle cramps, heart failure. > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@ >: > > > > > > > >I'm afraid this won't help you much but my personal answers are > in CAPS below: > > > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions > related to ER visits, etc. are redundant - kindly direct me where to > look. > > > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including > PA tests) to be performed, how to be managed while in the ER, fluids/ > meds to avoid etc. Sometimes ER staff complied, sometimes not. If > they had, my physicians may have had information they needed to pin > down a definitive diagnosis sooner. Again, thanks for time/ > consideration reading/replying: > > > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON > THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & > WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & > SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common > triggers? Details? > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency > services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING > RELATED TO PA. > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR > HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an > indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets > available for ER visits? If not, are there guidelines a person with > > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > > >) Details? > > > > > > > >And two additional questions: > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If > not, what diagnostic tests and testing schedule should be followed? > What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE > AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/ > non- surgical treatment of PA? Any clinitian preferences at either? > MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 One can live without adrenals if replacement is Done but it is tricky. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 2, 2009, at 9:21 PM, constellationmike <hohnka@...> wrote: > The treatment is....medication for the rest of my life. I've tried > both spironolactone and inspra. I get many side effects from both > medications. Currently on spiro because I can tolerate it a little > better. In addition to the hyperplasia of both adrenals I have 2 > adenomas on one of the glands. They didn't even recommend AVS. No > point I guess. Just a CT every year for a few years. > > Mike > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > There is a genetic test for familial PA. See my article. > > > > > > People also go to ER include irregular heart beats, severe > muscle cramps, heart failure. > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@ >: > > > > > > > >I'm afraid this won't help you much but my personal answers are > in CAPS below: > > > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions > related to ER visits, etc. are redundant - kindly direct me where to > look. > > > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including > PA tests) to be performed, how to be managed while in the ER, fluids/ > meds to avoid etc. Sometimes ER staff complied, sometimes not. If > they had, my physicians may have had information they needed to pin > down a definitive diagnosis sooner. Again, thanks for time/ > consideration reading/replying: > > > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON > THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & > WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & > SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common > triggers? Details? > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency > services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING > RELATED TO PA. > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR > HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an > indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets > available for ER visits? If not, are there guidelines a person with > > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > > >) Details? > > > > > > > >And two additional questions: > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If > not, what diagnostic tests and testing schedule should be followed? > What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE > AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/ > non- surgical treatment of PA? Any clinitian preferences at either? > MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Dr Logan says he does see patients and sent me his tele in Toronto. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 2, 2009, at 9:16 PM, constellationmike <hohnka@...> wrote: > Sue, > > Dr. Ball is located at the main outpatient facility in downtown > Baltimore. It was relatively easy to find, and parking was not a > problem. Let me know if you have more questions or if you would like > his contact information. > > Mike > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > There is a genetic test for familial PA. See my article. > > > > > > People also go to ER include irregular heart beats, severe > muscle cramps, heart failure. > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@ >: > > > > > > > >I'm afraid this won't help you much but my personal answers are > in CAPS below: > > > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions > related to ER visits, etc. are redundant - kindly direct me where to > look. > > > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including > PA tests) to be performed, how to be managed while in the ER, fluids/ > meds to avoid etc. Sometimes ER staff complied, sometimes not. If > they had, my physicians may have had information they needed to pin > down a definitive diagnosis sooner. Again, thanks for time/ > consideration reading/replying: > > > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON > THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & > WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & > SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common > triggers? Details? > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency > services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING > RELATED TO PA. > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR > HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an > indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets > available for ER visits? If not, are there guidelines a person with > > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > > >) Details? > > > > > > > >And two additional questions: > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If > not, what diagnostic tests and testing schedule should be followed? > What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE > AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/ > non- surgical treatment of PA? Any clinitian preferences at either? > MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > Connect with friends from any web browser - no download required. > Try the new Canada Messenger for the Web BETA at http://ca.messenger > ../webmessengerpromo.php > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 In the days before we did not understand role Of DASH ing on BP and med needs we tookmadrenals out of a number of people and it helped problem. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 2, 2009, at 7:10 PM, arthur springer <as99@...> wrote: > correct. surgery is ruled out for bilateral dysfunction. > > On Apr 2, 2009, at 7:07 PM, Jay Man wrote: > > > HI. Just curious what the treatment is for that? I assume only > > medication for one cannot live without both adrenals I think.... > > > > > > > > From: constellationmike <hohnka@...> > > Subject: Re: ER Questions > > hyperaldosteronism > > Date: Wednesday, April 1, 2009, 9:33 PM > > > > Hi all, > > > > I saw Dr Ball at Hopkins last year. My primary care Dr sent > > me to him for confirmation of my diagnosis. (Bilateral > hyperplasia) . > > I was very impressed with the facility and with how much time he > spent > > with me. He and his Fellow were with me for about 2 hours. He went > > over my entire history, looked at all of the previous blood work, > > saline loading results and 24 hour urine collection results. He > called > > me 2 weeks later to discuss my CT scans. He confirmed the diagnosis > > and recommended that I see an Endocrinologist regularly. He > offered to > > see me regularly, but it is 4 hrs from my home. All in all I was > happy > > with my experience and would recommend him to others.. > > > > Mike > > > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > There is a genetic test for familial PA. See my article. > > > > > > People also go to ER include irregular heart beats, severe muscle > > cramps, heart failure. > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > > <shahall@... >: > > > > > > > >I'm afraid this won't help you much but my personal answers are > in > > CAPS below: > > > > > > > >Read more old files/messages. Still not easily finding info I'm > > seeking for my particular concerns. If the following questions > related > > to ER visits, etc. are redundant - kindly direct me where to look. > > > > > > > >FYI - origin of my current questions is my suspected diagnosis > > switching between familial hypokalemic periodic paralysis and PA. My > > symptoms/labs were suggestive of both, inconclusive for either. To > > determine a definitive diagnosis, I was instructed, by physicians > > suspecting familial HPP, to report to the ER when I believed I was > > symptomatic for HPP with directives from them for tests (including > PA > > tests) to be performed, how to be managed while in the ER, fluids/ > meds > > to avoid etc. Sometimes ER staff complied, sometimes not. If they > had, > > my physicians may have had information they needed to pin down a > > definitive diagnosis sooner. Again, thanks for time/consideration > > reading/replying: > > > > > > > >1. Assuming individuals with PA have varied experiences/ > > expressions of the disease, what is TYPICALLY meant by the terms > > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE > > ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON THE > LOW > > SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & WEAKNESS, > > FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & SWEATING BUT I > > WOULDN'T CALL THIS AN EPISODE. > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common triggers? > > Details? > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency services? > > PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING RELATED TO PA. > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR > HEARTBEATS > > OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an indivifual > > with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets available > > for ER visits? If not, are there guidelines a person with > > > >PA should advocate for to ER staff during ER visits (such as > > protocols for using potassium lowering IV fluids, epinepherine, etc > > NOT THAT I KNOW OF > > > >) Details? > > > > > > > >And two additional questions: > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If not, > > what diagnostic tests and testing schedule should be followed? What > > tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE AND > RENIN > > LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/non- > > surgical treatment of PA? Any clinitian preferences at either? MAYBE > > DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2009 Report Share Posted April 2, 2009 Mike, they can't really diagnose hyperplasia vs. adenoma without doing AVS. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of constellationmike The treatment is....medication for the rest of my life. I've tried both spironolactone and inspra. I get many side effects from both medications. Currently on spiro because I can tolerate it a little better. In addition to the hyperplasia of both adrenals I have 2 adenomas on one of the glands. They didn't even recommend AVS. No point I guess. Just a CT every year for a few years. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 I don't understand how would AVS distinguish between hyperplasia and adenoma? a From: Valarie <val@...> Subject: RE: Re: ER Questions hyperaldosteronism Date: Friday, April 3, 2009, 12:46 AM Mike, they can't really diagnose hyperplasia vs. adenoma without doing AVS. Val From: hyperaldosteronism [mailto:hyperaldosteronism] On Behalf Of constellationmike The treatment is....medication for the rest of my life. I've tried both spironolactone and inspra. I get many side effects from both medications. Currently on spiro because I can tolerate it a little better. In addition to the hyperplasia of both adrenals I have 2 adenomas on one of the glands. They didn't even recommend AVS. No point I guess. Just a CT every year for a few years. Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 AVS, done successfully, shows whether one or both adrenals are over-producing aldosterone. If both are producing about the same, hyperplasia is assumed. If one is producing significantly more than the other, an adenoma is assumed. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of a Hall I don't understand how would AVS distinguish between hyperplasia and adenoma? a From: Valarie <val@... <mailto:val%40wyosip.com> > Mike, they can't really diagnose hyperplasia vs. adenoma without doing AVS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Based on my own investigations, including reading many scientific papers on the subject, adrenal venous sampling is a moderately high-risk diagnostic test that should be performed only by individuals with a record of high case volume and minimal or no complications. It is possible to get this information, or approximations of it, from several sources. Ethical physicians will disclose it, high-volume endocrinology surgeons will know of competent AVS people in their areas. New York State does not keep statistics on this procedure by individual and hospital as it does for many other risky invasive tests and surgeries. The state has been asked to correct this deficiency and if there are people on this site who live in NY and can support that request, please contact me: as99@.... On Apr 3, 2009, at 2:09 PM, Valarie wrote: > AVS, done successfully, shows whether one or both adrenals are > over-producing aldosterone. If both are producing about the same, > hyperplasia is assumed. If one is producing significantly more than > the > other, an adenoma is assumed. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of a Hall > > I don't understand how would AVS distinguish between hyperplasia and > adenoma? > > a > > > > From: Valarie <val@... <mailto:val%40wyosip.com> > > > Mike, they can't really diagnose hyperplasia vs. adenoma without > doing AVS. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Hyperplasia has high aldo on both sides. Adenoma only one side. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 3, 2009, at 5:42 AM, a Hall <shahall@...> wrote: > I don't understand how would AVS distinguish between hyperplasia and > adenoma? > > a > > > > From: Valarie <val@...> > Subject: RE: Re: ER Questions > hyperaldosteronism > Date: Friday, April 3, 2009, 12:46 AM > > Mike, they can't really diagnose hyperplasia vs. adenoma without > doing AVS. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism] On Behalf Of > constellationmike > > The treatment is....medication for the rest of my life. I've tried > both > spironolactone and inspra. I get many side effects from both > medications. > Currently on spiro because I can tolerate it a little better. In > addition to > the hyperplasia of both adrenals I have 2 adenomas on one of the > glands. > They didn't even recommend AVS. No point I guess. Just a CT every > year for a > few years. > > Mike > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 I had a CT of abdomen read as normal. If I'd have had AVS then instead of MRI, I would have been assumed to have hyperplasia instead of bilateral adenomas? But I guess it wouldn't matter since neither conditions are considered operable? Is it possible to have a hyperplastic adrenal gland with an adenoma? If so, any way to determine that before surgery? I know, too many questions, sorry. a > > From: Valarie <val@...> > Subject: RE: [hyperaldosteronism ] Re: ER Questions > hyperaldosteronism > Date: Friday, April 3, 2009, 12:46 AM > > Mike, they can't really diagnose hyperplasia vs. adenoma without > doing AVS. > > Val > > From: hyperaldosteronism > [mailto:hyperaldost eronism] On Behalf Of > constellationmike > > The treatment is....medication for the rest of my life. I've tried > both > spironolactone and inspra. I get many side effects from both > medications. > Currently on spiro because I can tolerate it a little better. In > addition to > the hyperplasia of both adrenals I have 2 adenomas on one of the > glands. > They didn't even recommend AVS. No point I guess. Just a CT every > year for a > few years. > > Mike > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 All a CT can do is sometimes show a bump. It cannot diagnose hyperplasia or an actively producing adenoma. In 40% of cases (according to some articles), it misses an adenoma. If AVS shows relatively equal aldosterone production from both sides, hyperplasia can be assumed and surgery is not done. If AVS shows much more production from one side than the other, an operable adenoma is assumed. I remembering Dr. Grim saying that the tiny, tiny adenomas seemed to be the most treacherous. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of a Hall I had a CT of abdomen read as normal. If I'd have had AVS then instead of MRI, I would have been assumed to have hyperplasia instead of bilateral adenomas? But I guess it wouldn't matter since neither conditions are considered operable? Is it possible to have a hyperplastic adrenal gland with an adenoma? If so, any way to determine that before surgery? I know, too many questions, sorry. a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 And all start as tiny adenomas prob only 2 Cells. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 3, 2009, at 6:21 PM, Valarie <val@...> wrote: > All a CT can do is sometimes show a bump. It cannot diagnose > hyperplasia or > an actively producing adenoma. In 40% of cases (according to some > articles), it misses an adenoma. If AVS shows relatively equal > aldosterone > production from both sides, hyperplasia can be assumed and surgery > is not > done. If AVS shows much more production from one side than the > other, an > operable adenoma is assumed. > > I remembering Dr. Grim saying that the tiny, tiny adenomas seemed to > be the > most treacherous. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of a Hall > > I had a CT of abdomen read as normal. If I'd have had AVS then > instead of > MRI, I would have been assumed to have hyperplasia instead of > bilateral > adenomas? But I guess it wouldn't matter since neither conditions are > considered operable? Is it possible to have a hyperplastic adrenal > gland > with an adenoma? If so, any way to determine that before surgery? I > know, > too many questions, sorry. > > a > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Thanks Kim for the information This is really a wonderful group. From: kimsstay <kimshannons@...> Subject: Re: ER Questions hyperaldosteronism Received: Friday, April 3, 2009, 9:43 AM Sue, If you do come down to the States you may want to consider the Mayo in Rochester. That is where I rec'd my diagnosis and have been back for ongoing care. I saw Dr. Graves and Dr. in Hypertension/ Nephrology -- both excellent and very knowledgable of PA. Also saw Dr. Abboud in Endocrinolgy, again an excellent doctor in all regards. Kim __________________________________________________________________ Canada Toolbar: Search from anywhere on the web, and bookmark your favourite sites. Download it now http://ca.toolbar.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Hi Dr Grim The number I had called for Dr Logan was 416-586-4800 ext.5187and recieved the information. Could you provide me with the number with you have? Thanks Suzzette > Sue, > > Dr. Ball is located at the main outpatient facility in downtown > Baltimore. It was relatively easy to find, and parking was not a > problem. Let me know if you have more questions or if you would like > his contact information. > > Mike > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > There is a genetic test for familial PA. See my article. > > > > > > People also go to ER include irregular heart beats, severe > muscle cramps, heart failure. > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@ >: > > > > > > > >I'm afraid this won't help you much but my personal answers are > in CAPS below: > > > > > > > >Read more old files/messages. Still not easily finding info I'm > seeking for my particular concerns. If the following questions > related to ER visits, etc. are redundant - kindly direct me where to > look. > > > > > > > >FYI - origin of my current questions is my suspected diagnosis > switching between familial hypokalemic periodic paralysis and PA. My > symptoms/labs were suggestive of both, inconclusive for either. To > determine a definitive diagnosis, I was instructed, by physicians > suspecting familial HPP, to report to the ER when I believed I was > symptomatic for HPP with directives from them for tests (including > PA tests) to be performed, how to be managed while in the ER, fluids/ > meds to avoid etc. Sometimes ER staff complied, sometimes not. If > they had, my physicians may have had information they needed to pin > down a definitive diagnosis sooner. Again, thanks for time/ > consideration reading/replying: > > > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON > THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & > WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & > SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common > triggers? Details? > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency > services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING > RELATED TO PA. > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek emergency > services? I WOULD GO IF I STARTED HAVING A LOT OF IRREGULAR > HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an > indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets > available for ER visits? If not, are there guidelines a person with > > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > > >) Details? > > > > > > > >And two additional questions: > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If > not, what diagnostic tests and testing schedule should be followed? > What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE > AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/ > non- surgical treatment of PA? Any clinitian preferences at either? > MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ____________ _________ _________ _________ _________ _________ _ > > Connect with friends from any web browser - no download required. > Try the new Canada Messenger for the Web BETA at http://ca.messenger > ../ webmessengerprom o.php > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2009 Report Share Posted April 3, 2009 Contact Dr Atlas or Larry Krakoff in NYC. TELL them I sent u. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 3, 2009, at 1:24 PM, arthur springer <as99@...> wrote: > Based on my own investigations, including reading many scientific > papers on the subject, adrenal venous sampling is a moderately > high-risk diagnostic test that should be performed only by individuals > with a record of high case volume and minimal or no complications. It > is possible to get this information, or approximations of it, from > several sources. Ethical physicians will disclose it, high-volume > endocrinology surgeons will know of competent AVS people in their > areas. New York > State does not keep statistics on this procedure by individual and > hospital as it does for many other risky invasive tests and surgeries. > The state has been asked to correct this deficiency and if there are > people on this site who live in NY and can support that request, > please > contact me: as99@.... > > On Apr 3, 2009, at 2:09 PM, Valarie wrote: > > > AVS, done successfully, shows whether one or both adrenals are > > over-producing aldosterone. If both are producing about the same, > > hyperplasia is assumed. If one is producing significantly more than > > the > > other, an adenoma is assumed. > > > > Val > > > > From: hyperaldosteronism > > [mailto:hyperaldosteronism ] On Behalf Of a Hall > > > > I don't understand how would AVS distinguish between hyperplasia and > > adenoma? > > > > a > > > > > > > > From: Valarie <val@... <mailto:val%40wyosip.com> > > > > > Mike, they can't really diagnose hyperplasia vs. adenoma without > > doing AVS. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2009 Report Share Posted April 4, 2009 Sounds like you were the typical " drug Resistant pt described in my evolution Article. Tiped sad Send form mi iPhone ;-) May your pressure be low! CE Grim MD Specializing in Difficult Hypertension On Apr 4, 2009, at 8:03 PM, <medgerly@...> wrote: > In response to Sue, I saw an endo at Hopkins who diagnosed me--his > name is Dr. Salvatori. He was excellent, but I opted to go to NIH, > which was, and probably still is, conducting a clinical trial on > adrenal neoplasms. They did my AVS at no charge and would have done > my surgery as well had I needed it. However, I had bilateral > hyperplasia, and my BP is now completely controlled with > Spironolactone and one additional BP med--I used to be on FOUR BP > meds and my BP was completely uncontrolled and dangerous for years. > I was very pleased with the care I received at NIH, and these > doctors are on the " cutting edge " of PA. > > Best, > (Bilateral hyperplasia, elevated cortisol but no overt Cushings) > > > > > > > > > > someone here has done Hopkins and someone NIH. > > > > > > > > There is a genetic test for familial PA. See my article. > > > > > > > > People also go to ER include irregular heart beats, severe > muscle cramps, heart failure. > > > > > > > > > > > > Just tell ER people you have PA and to look it up. > > > > > > > > > > > > > > > > > > > > Clarence E. Grim, BS, MS, MD > > > > > > > > > > > > Am Mittwoch 01 April 2009 um 05:18PM schrieb " a Hall " > <shahall@ >: > > > > > > > > > >I'm afraid this won't help you much but my personal answers > are in CAPS below: > > > > > > > > > >Read more old files/messages. Still not easily finding info > I'm seeking for my particular concerns. If the following questions > related to ER visits, etc. are redundant - kindly direct me where to > look. > > > > > > > > > >FYI - origin of my current questions is my suspected > diagnosis switching between familial hypokalemic periodic paralysis > and PA. My symptoms/labs were suggestive of both, inconclusive for > either. To determine a definitive diagnosis, I was instructed, by > physicians suspecting familial HPP, to report to the ER when I > believed I was symptomatic for HPP with directives from them for > tests (including PA tests) to be performed, how to be managed while > in the ER, fluids/meds to avoid etc. Sometimes ER staff complied, > sometimes not. If they had, my physicians may have had information > they needed to pin down a definitive diagnosis sooner. Again, thanks > for time/consideration reading/replying: > > > > > > > > > >1. Assuming individuals with PA have varied experiences/ > expressions of the disease, what is TYPICALLY meant by the terms > " attacks " and " episodes " used in some posts? I DON'T KNOW EITHER. > THE ONLY 'EPISODES' I'VE EVER HAD IS WHEN MY K+ STARTS GETTING ON > THE LOW SIDE, THEN I GET IRREGULAR HEARTBEATS, MUSCLE CRAMPS & > WEAKNESS, FATIGUE. I DO HAVE EPISODES OF UNEXPLAINED FLUSHING & > SWEATING BUT I WOULDN'T CALL THIS AN EPISODE. > > > > > > > > > >2. Regarding PA " attacks " " episodes " - are there common > triggers? Details? > > > > >NONE, FOR ME IT'S RELATED TO LOW K+. > > > > > > > > > >3. GENERALLY, why do individuals with PA seek emergency > services? PERSONALLY, I NEVER HAVE BEEN TO THE ER FOR ANYTHING > RELATED TO PA. > > > > > > > > > >4. SPECIFICALLY, when should individuals with PA seek > emergency services? I WOULD GO IF I STARTED HAVING A LOT OF > IRREGULAR HEARTBEATS OR PALPITATIONS, I WOULD NEED K+ REPLACEMENT. > > > > > > > > > >5. SPECIFICALLY, excluding PA surgery, when should an > indivifual with PA be hospitalized for PA? I NEVER HAVE. > > > > > > > > > >6. Excluding Dr. Grim's article, are there data sheets > available for ER visits? If not, are there guidelines a person with > > > > >PA should advocate for to ER staff during ER visits (such as > protocols for using potassium lowering IV fluids, epinepherine, etc > NOT THAT I KNOW OF > > > > >) Details? > > > > > > > > > >And two additional questions: > > > > > > > > > >7. Any data sheets available for diagnostic tests for PA? If > not, what diagnostic tests and testing schedule should be followed? > What tests should be avoided? THE FIRST TWO SHOULD BE ALDOSTERONE > AND RENIN LEVELS, THEN GO FROM THERE. DR. GRIM CAN TELL YOU MORE. > > > > > > > > > >8. Any preference between NIH or s Hopkins for diagnosis/ > non- surgical treatment of PA? Any clinitian preferences at either? > MAYBE DR GRIM OR ANOTHER MEMBER COULD ANSWER THIS FOR YOU. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________________ > > > Connect with friends from any web browser - no download > required. Try the new Canada Messenger for the Web BETA at http://ca.messenger > ../webmessengerpromo.php > > > > > > Quote Link to comment Share on other sites More sharing options...
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