Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 I was diagnosed one year ago with cml, just went back to work full time as a special education preschool teacher. I am struggling working full time and raising three children and taking care of myself. Any suggestions from others dealing with life. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Sometimes analogies work better than advise. Think of an 8 " pie. No matter how much you would like it to be 12 " it won't magically grow. The same holds true with our ability to focus. With the onset of any illness or disease, the system is taxed both physically and emotionally. What someone was able to do prior the the onset, they may not be able to do afterwards. My wife experienced this after her stroke and I believe it also applies to CML and other illnesses. Think about thresholds: with illness, the threshold at which you stopped functioning effectively is lowered. People need to make choices. They can continue doing what they have been doing realizing that the quality will suffer with the threshold being exceeded more quickly then in the past. Or they can reduce the load on their systems to a level where the threshold isn't exceeded. Quality remains, but the number of things done is reduced. I've found in both my personal life and in counseling people with various illnesses, you can't have both. 8 " pies don't become 12 " ones, no matter how much we wish they would. Hope this helps. Take Care, Stan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2012 Report Share Posted July 27, 2012 Likely, the thiazide caused excess potassium excretion which resulted in more muscle pain. It's hard to comment on anything else without tests, numbers, age, other conditions, etc. Has anyone told you to DASH? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of gamorra70 Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. History: Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high.Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2012 Report Share Posted July 27, 2012 High Aldo without renin test only says your Aldo is high but doesn't give enough information as to cause. > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > History: > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2012 Report Share Posted July 27, 2012 Every lab has their own cutoffs so we can't tell you. Send us the numbers when u have them. My reading based on your has is that you have excess also. But need numbers. What was the 24 hr urine Na and K when testing was done? Need thumbnail to keep u separate frM the other 700+ here. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 27, 2012, at 17:07, gamorra70 <womckinsey@...> wrote: Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. History: Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2012 Report Share Posted July 28, 2012 Were u on these when saline done? Unless they have normals done at 7pm. Difficult to interpret. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 28, 2012, at 15:22, Wesley <womckinsey@...> wrote: the copies I have of the saline supression test show: ALDOSTERONE = 10 reference range <=21 :reference range based on upright A.M. collection from subject on ad lib sodium uptake ( I did it at 7pm??) test performed by: Mayo Clinic Laboratories - Rochester main campus etc.. (i'm in Idaho) Basic Metabolic panel: Glucose = 110 (H) 74-100mg/dl (they let me eat during test) BUN = 10 9-20 mg/dl Creatine = .8 .66-1.25 mg/dl EST GFR By MDRD >60 >60 SODIUM = 144 137-145 mmmol/L POTASSIUM = 3.9 3.5-5.1 mmol/L (I take 20 MEQ ER once daily) CHOLORIDE = 107 98-107 mmol/L Carbon Dioxide = 29 22-30 mmol/L anion gap = 11.9 calcium = 8.6 8.4-10 mg/dl this is post saline suppresion at 7pm . I am worried that they are not doing the right tests. im 42 .. ht: 5'8 wt: 220 I take Losartan 100mg 1/dy bystolic 20mg 1/dy prozasin 2mg 2/dy savella 50mg 1/dy tramadol 50mg 3/dy potassium 20 MEQ 1/dy I'll post the 24hr urine and blood tests when I get a copy on Monday. Actually I'll try and call the hospital and see if I can get copies today ** not sure how to do thumbnail thingy..I'm new to this stuff > > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > > History: > > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2012 Report Share Posted July 28, 2012 If u have PA PEEING a lot most likely related to low blood K May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 28, 2012, at 15:24, Wesley <womckinsey@...> wrote: thats funny you should say that..I have had several doctors tell me i'm insuline resistant a tad bit. I see an endo for my prolactinoma and he does blood tests all the time... he even said that, but seemed not too concerned. I'll run that by him as well > > Drinking a lot of water? By any chance can this be related to diabetes? > > > > Max. 62M PA > > > > From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of womckinsey > Sent: 2012-Jul-28 Saturday 10:23 > hyperaldosteronism > Cc: hyperaldosteronism ; Clarence Grim > Subject: Re: Struggling > > > > > > > > > I do not eat licorice. And it depends on the day. A few days after the saline loading test I got up every hour to pee. It was alot. But all my cramps went away after that night. Now they are building back up. It's like I go through cycles of this. The last 2 days I didn't even feel like peeing when I first got up. Which is unusual. Then some days I will pee all day long and get up few times at night. I drink lots of water because I always feel thirsty. > > I'll really appreciate the interest . It's so lonely in the world trying to find answers and support!! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2012 Report Share Posted July 28, 2012 yes.. except for last prozasin,bystolic . I take 2 tram in the am and one in the afternoon but did not get a chance for the last one. I take the 2nd prozasin at night along with the bystolic, so I had not taken them yet. Bummer..they did not do any pre sampling I swear.... this makes me nervous..I'll mention all this to kindey doc on Monday. Test started at 2:30 and ended at 7. had to wait 20 minutes after last saline before they drew the blood. they actually drew from the other arm, not the saline site Thanks for your time ! > > > > > > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > > > > History: > > > > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > > > > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > > > > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2012 Report Share Posted July 28, 2012 This was at NIH or at local dr? I have done over 1,000 of these but never one that ended at 7 PM. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 28, 2012, at 15:42, Wesley <womckinsey@...> wrote: yes.. except for last prozasin,bystolic . I take 2 tram in the am and one in the afternoon but did not get a chance for the last one. I take the 2nd prozasin at night along with the bystolic, so I had not taken them yet. Bummer..they did not do any pre sampling I swear.... this makes me nervous..I'll mention all this to kindey doc on Monday. Test started at 2:30 and ended at 7. had to wait 20 minutes after last saline before they drew the blood. they actually drew from the other arm, not the saline site Thanks for your time ! > > > > > > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > > > > History: > > > > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > > > > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > > > > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2012 Report Share Posted July 29, 2012 It was done at local hospital. That's where I was sent for the test. Sent from my iPhoneOn Jul 28, 2012, at 2:56 PM, Clarence Grim <lowerbp2@...> wrote: This was at NIH or at local dr? I have done over 1,000 of these but never one that ended at 7 PM. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 28, 2012, at 15:42, Wesley <womckinsey@...> wrote: yes.. except for last prozasin,bystolic . I take 2 tram in the am and one in the afternoon but did not get a chance for the last one. I take the 2nd prozasin at night along with the bystolic, so I had not taken them yet. Bummer..they did not do any pre sampling I swear.... this makes me nervous..I'll mention all this to kindey doc on Monday. Test started at 2:30 and ended at 7. had to wait 20 minutes after last saline before they drew the blood. they actually drew from the other arm, not the saline site Thanks for your time ! > > > > > > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > > > > History: > > > > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > > > > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > > > > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2012 Report Share Posted July 30, 2012 maybe first one they have ever done?CE Grim MDOn Jul 29, 2012, at 6:51 PM, womckinsey wrote: It was done at local hospital. That's where I was sent for the test. Sent from my iPhoneOn Jul 28, 2012, at 2:56 PM, Clarence Grim <lowerbp2@...> wrote: This was at NIH or at local dr? I have done over 1,000 of these but never one that ended at 7 PM. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn Jul 28, 2012, at 15:42, Wesley <womckinsey@...> wrote: yes.. except for last prozasin,bystolic . I take 2 tram in the am and one in the afternoon but did not get a chance for the last one. I take the 2nd prozasin at night along with the bystolic, so I had not taken them yet. Bummer..they did not do any pre sampling I swear.... this makes me nervous..I'll mention all this to kindey doc on Monday. Test started at 2:30 and ended at 7. had to wait 20 minutes after last saline before they drew the blood. they actually drew from the other arm, not the saline site Thanks for your time ! > > > > > > > Hello all.. I always feel at the end if my rope. Some days much worse than others. The past two days have been miserable. > > > > History: > > > > Been dealing with pain issues and high BP for the last two years. Pain doc says fibro but I am not a believer. Always had an intuition that something was not running under my hood. BP would fluctuate and was very hard to control. I ignored it for done time until it started giving me headaches and making me feel really bad. Been all over the spectrum with BP meds. What's funny.. Hydrochlorothiazide seemed to work ok but made me ache so bad.. Could not stay on it. They finally did a urine test and it showed proteinuria. I was just going to a local walk in doc on the box. I asked them to ct scan my kidneys. Results showed infection or scarring.. She couldn't tell so she sent me to a kidney specialist. This guy actually looked through my history and ER visits and the first question was.. Do you always have low potassium.. I shrugged .. I told him that a few docs told me to eat bananas. He ordered some blood tests and a 24hr urine test that had some acid in the jug. He put me on potassium and bystolic, losartan and prozasan. It was not working well. He doubled the bystolic and it lowered my BP a bit to a range of 90/140. I was hovering in the 110/160 and some days even higher . Some days it does not matter what I do.. My BP is through the roof. I wake up with it that high. > > > > Anyway. Results showed high aldosterone and he said he figured it was that. He sent me for a saline suppression test. I felt pretty good a day or do after the test bit then got so achy I could hardly walk. Then one night I pee'ed so much.. Every hour I was unloading tons of urine.. Then the aches went away?? Weird. > > > > I got a copy of my saline suppression and it was 10 ng/dl. The test sheet says its in the normal range. Every peice of literature I read says 5 or lower is good . 10 is suspicious if not for sure hyperaldosteronism ?? What's the cutoff. I see him Monday . I wanna make I don't get over looked. It's been a long road and it's not getting better. Been missing lots of work > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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