Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 What's the "burning mouth" thing? I am really curious. I have something like that that comes and goes and get's pretty extreme sometimes. It thought it was related to my anemia - that's a common B12 deficieny symptom (the most common maybe?), but my B12 doesn't show low, yet it seemed like when my anemia got a little better, so did my mouth burning. I assumed back in the day my PA and hypokalemia , and hypertyhroid, were all likely the cause of a weak immune system. When those got better so did I and had a good 2011. 2012 Has got me a bit though and I have been fighting something since new years. Got the flu and then everything seemed to turn on again. still my anemia never has gone normal on the labs for almost a year now. They can't find the cause yet and I thought the anemia was getting better because I feel more energeti,c but last visit 2 weeks ago it had gotten much worse. And this past week I can't hardly eat anything because of my mouth (sure helps with dashing though!). That comes and goes and I have always had abnormal teeth problems anyway, mom and sisters too (all of us who had hyperthyroidism). Do you have some teeth issues too? Dentists used to tell me and my parents I had no enamel and it was strange but we had no $$ to investigate further. Some thought maybe GERD but we don't know that either. Do you have herpes-like sores? I do not, but it burns all over. Lips, gums etc. and putting on some lip balm hurts like hell. Occasionally I have noticed a sore or two, but not usually. Mine has come and gone for a couple of years now. Back when my PA wasn't yet diagnosed and right after it was I wasn't always getting routine CBC's though so if it was anemia causing the sores I wouldn't have known. Honestly though no one knows what it is that causes the mouth issue. Regarding my PA, especially toward the end. I am a 45 (next week anyway) male and I have talked at length about my symptoms, but one I do not talk about a lot was this rash I had and sometimes have all over my legs and groin. It was clearly fungal (I played ALOT of sports - basketball # 1 even into adulthood so I have the 45 year-old man gymnasium fungal toenails - not THAT gross that I can't go swimming, but it's there). I got it down by being aggressive with the creams on my legs and groin, but it has reared up a little. Not as bad though. It was all over at times. All over like a diabetic gets, but I am not DM. One more funny thing....about immunity,,,,I have one solitary wart that formed a few years ago on my right index finger. I keep it because when my immune system seems weaker, the wart grows. And then shrinks. I told the doc it was my immune barometer and I up the vit C when I notice it Anyway curious as to what the doc tells you as I have had some mouth issue for a while. -- On Fri, 5/11/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re: Dr. giving gamma glabulin good credentials. I would pubmed his name to see if has ever published on it. Same to giving GG for low GG."hyperaldosteronism " <hyperaldosteronism >Date: Friday, May 11, 2012, 10:37 PM Also not my area of expertise. So I will bow out now. Keep us posted. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 11, 2012, at 21:26, StaceyF <ssminnow@...> wrote: From what I have read and understand is that it may help in some but not all. Since I am at higher risk for more serious infections and that my B lymphocytes and my T supresser cells are very low, they felt it may help. I cycle high post IGG ( 1,000) and drop down lower right before the next diose but not as low as I started showing that it is at least boosting my immunity. It is supossedly a apprx. 23 day cycle begore it leaves tour system. He said if i missed a month my levels would be back in the 500's. From the hospital I know Dr. sees many with primary immune disorders and is the most knowledgable around here. Most of his work has been in hemophilia. But he looks at the whole person instead if the condition. That is why he was my second opinion and he did further tests to determine that it would likely help. He also thinks the burning mouth problems I have is herpes that keeps coming back because of low immunity. > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > I had put them, but they do not seem> > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > simvastatin, 40 meq potassium, high dose> > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > wellbutrin xl 450mg, klonopin, alpha lipoic> > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > awake), phenergen as needed for nausea,> > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > newly added AMANTADINE for headache. I> > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > meds to prevent the headache which all> > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > ACE inhibitor until July last year and> > > > > >> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 It is all speculation but I started having this burning tongue (tip), inside cheeks, my lips and also lips were numb inside(like dental work when it is starting to get the feeling back) and fissures on my tongue. That was April last year. I researched it and thought burning mouth syndrome sounded like me. Myouth is dry on the front but very wet in the back. I get lesions on my tongue, and cheeks but last 2 days. Not often but the pain and dryness is always there. Now my gums are deteriorating on the bottom because of the damage of dryness. Nothing helps. Tried biotene, all of it. Started taking alpha lipoic acid and klonopin as they are to help BMS. It got a bit less burning. Oral surgeon has no clue, dentist no clue, doc gave me manic mouth wash which put my mouth on fire. This hematologist said it may be herpes and with the low immunity it is surfacing. Went on acyclovir for a week and it improved the numbness and pain. 4 days after last dose, all came back. He said maybe u will need it as needed but did not give me a script. So now have to see my PCP. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > > I had put them, but they do not seem > > > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > > simvastatin, 40 meq potassium, high dose > > > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > > wellbutrin xl 450mg, klonopin, alpha lipoic > > > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > > awake), phenergen as needed for nausea, > > > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > > newly added AMANTADINE for headache. I > > > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > > meds to prevent the headache which all > > > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > > ACE inhibitor until July last year and > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 Can u detail you anemia work up?pretty standard and should lead to cause or need for bone marrow. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 12, 2012, at 1:51, Bingham <jlkbbk2003@...> wrote: What's the "burning mouth" thing? I am really curious. I have something like that that comes and goes and get's pretty extreme sometimes. It thought it was related to my anemia - that's a common B12 deficieny symptom (the most common maybe?), but my B12 doesn't show low, yet it seemed like when my anemia got a little better, so did my mouth burning. I assumed back in the day my PA and hypokalemia , and hypertyhroid, were all likely the cause of a weak immune system. When those got better so did I and had a good 2011. 2012 Has got me a bit though and I have been fighting something since new years. Got the flu and then everything seemed to turn on again. still my anemia never has gone normal on the labs for almost a year now. They can't find the cause yet and I thought the anemia was getting better because I feel more energeti,c but last visit 2 weeks ago it had gotten much worse. And this past week I can't hardly eat anything because of my mouth (sure helps with dashing though!). That comes and goes and I have always had abnormal teeth problems anyway, mom and sisters too (all of us who had hyperthyroidism). Do you have some teeth issues too? Dentists used to tell me and my parents I had no enamel and it was strange but we had no $$ to investigate further. Some thought maybe GERD but we don't know that either. Do you have herpes-like sores? I do not, but it burns all over. Lips, gums etc. and putting on some lip balm hurts like hell. Occasionally I have noticed a sore or two, but not usually. Mine has come and gone for a couple of years now. Back when my PA wasn't yet diagnosed and right after it was I wasn't always getting routine CBC's though so if it was anemia causing the sores I wouldn't have known. Honestly though no one knows what it is that causes the mouth issue. Regarding my PA, especially toward the end. I am a 45 (next week anyway) male and I have talked at length about my symptoms, but one I do not talk about a lot was this rash I had and sometimes have all over my legs and groin. It was clearly fungal (I played ALOT of sports - basketball # 1 even into adulthood so I have the 45 year-old man gymnasium fungal toenails - not THAT gross that I can't go swimming, but it's there). I got it down by being aggressive with the creams on my legs and groin, but it has reared up a little. Not as bad though. It was all over at times. All over like a diabetic gets, but I am not DM. One more funny thing....about immunity,,,,I have one solitary wart that formed a few years ago on my right index finger. I keep it because when my immune system seems weaker, the wart grows. And then shrinks. I told the doc it was my immune barometer and I up the vit C when I notice it Anyway curious as to what the doc tells you as I have had some mouth issue for a while. -- On Fri, 5/11/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re: Dr. giving gamma glabulin good credentials. I would pubmed his name to see if has ever published on it. Same to giving GG for low GG."hyperaldosteronism " <hyperaldosteronism >Date: Friday, May 11, 2012, 10:37 PM Also not my area of expertise. So I will bow out now. Keep us posted. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 11, 2012, at 21:26, StaceyF <ssminnow@...> wrote: From what I have read and understand is that it may help in some but not all. Since I am at higher risk for more serious infections and that my B lymphocytes and my T supresser cells are very low, they felt it may help. I cycle high post IGG ( 1,000) and drop down lower right before the next diose but not as low as I started showing that it is at least boosting my immunity. It is supossedly a apprx. 23 day cycle begore it leaves tour system. He said if i missed a month my levels would be back in the 500's. From the hospital I know Dr. sees many with primary immune disorders and is the most knowledgable around here. Most of his work has been in hemophilia. But he looks at the whole person instead if the condition. That is why he was my second opinion and he did further tests to determine that it would likely help. He also thinks the burning mouth problems I have is herpes that keeps coming back because of low immunity. > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > I had put them, but they do not seem> > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > simvastatin, 40 meq potassium, high dose> > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > wellbutrin xl 450mg, klonopin, alpha lipoic> > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > awake), phenergen as needed for nausea,> > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > newly added AMANTADINE for headache. I> > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > meds to prevent the headache which all> > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > ACE inhibitor until July last year and> > > > > >> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 Thanks. I attributed my dry mouth to the spiro I was on, but still have it and off spiro for a bit now. The biotene gel works good for me for a little while, and I teach right now so it helps the dry mouth. Can't chew gum. Like you mouth wash of any kind sets me on fire. Did they rule out Sjogrens on you? I asked my doc to do some of the tests at my last visit and she's a new doc and said she wants to let "rheumatology check for those things " (to rule out lupus, systemic sclerosis, and sjogrens for starters) but they sent me to one who doesn't take the insurance, TWICE now,so I haven't gone yet, and I got into with her last visit and actually got mad for once about the PA being ignored for years and always being kissed off and in limbo because every one else thinks every one else is doing the right testing and no one wants to uncover something anymore they just want something quick and routine. She didn't like that. So I guess I have to find a new doc again. She still wouldn't even order the rheumatoid panel or anything and now they are just looking for a rheum for me again with no appointment yet - so I know that's about 3 months off at minimum. They need to stop talking about the "business" aspect of medical practice in medical school and go back to the basics of diagnosis and taking pride in your work and that patients really DO matter. -- On Sat, 5/12/12, StaceyF <ssminnow@...> wrote: From: StaceyF <ssminnow@...>Subject: Re: Re mouth soreshyperaldosteronism Date: Saturday, May 12, 2012, 11:20 AM It is all speculation but I started having this burning tongue (tip), inside cheeks, my lips and also lips were numb inside(like dental work when it is starting to get the feeling back) and fissures on my tongue. That was April last year. I researched it and thought burning mouth syndrome sounded like me. Myouth is dry on the front but very wet in the back. I get lesions on my tongue, and cheeks but last 2 days. Not often but the pain and dryness is always there. Now my gums are deteriorating on the bottom because of the damage of dryness. Nothing helps. Tried biotene, all of it. Started taking alpha lipoic acid and klonopin as they are to help BMS. It got a bit less burning. Oral surgeon has no clue, dentist no clue, doc gave me manic mouth wash which put my mouth on fire. This hematologist said it may be herpes and with the low immunity it is surfacing. Went on acyclovir for a week and it improved the numbness and pain. 4 days after last dose, all came back. He said maybe u will need it as needed but did not give me a script. So now have to see my PCP.> > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > > I had put them, but they do not seem> > > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > > simvastatin, 40 meq potassium, high dose> > > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > > wellbutrin xl 450mg, klonopin, alpha lipoic> > > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > > awake), phenergen as needed for nausea,> > > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > > newly added AMANTADINE for headache. I> > > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > > meds to prevent the headache which all> > > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > > ACE inhibitor until July last year and> > > > > > >> > > > >> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 I am reasonably certain that medical school does not teach the business of medicine. We focus on dx and Rx. May your pressure be low!CE Grim MS, MDSpecializing in DifficultHypertensionOn May 12, 2012, at 18:19, Bingham <jlkbbk2003@...> wrote: Thanks. I attributed my dry mouth to the spiro I was on, but still have it and off spiro for a bit now. The biotene gel works good for me for a little while, and I teach right now so it helps the dry mouth. Can't chew gum. Like you mouth wash of any kind sets me on fire. Did they rule out Sjogrens on you? I asked my doc to do some of the tests at my last visit and she's a new doc and said she wants to let "rheumatology check for those things " (to rule out lupus, systemic sclerosis, and sjogrens for starters) but they sent me to one who doesn't take the insurance, TWICE now,so I haven't gone yet, and I got into with her last visit and actually got mad for once about the PA being ignored for years and always being kissed off and in limbo because every one else thinks every one else is doing the right testing and no one wants to uncover something anymore they just want something quick and routine. She didn't like that. So I guess I have to find a new doc again. She still wouldn't even order the rheumatoid panel or anything and now they are just looking for a rheum for me again with no appointment yet - so I know that's about 3 months off at minimum. They need to stop talking about the "business" aspect of medical practice in medical school and go back to the basics of diagnosis and taking pride in your work and that patients really DO matter. -- On Sat, 5/12/12, StaceyF <ssminnow@...> wrote: From: StaceyF <ssminnow@...>Subject: Re: Re mouth soreshyperaldosteronism Date: Saturday, May 12, 2012, 11:20 AM It is all speculation but I started having this burning tongue (tip), inside cheeks, my lips and also lips were numb inside(like dental work when it is starting to get the feeling back) and fissures on my tongue. That was April last year. I researched it and thought burning mouth syndrome sounded like me. Myouth is dry on the front but very wet in the back. I get lesions on my tongue, and cheeks but last 2 days. Not often but the pain and dryness is always there. Now my gums are deteriorating on the bottom because of the damage of dryness. Nothing helps. Tried biotene, all of it. Started taking alpha lipoic acid and klonopin as they are to help BMS. It got a bit less burning. Oral surgeon has no clue, dentist no clue, doc gave me manic mouth wash which put my mouth on fire. This hematologist said it may be herpes and with the low immunity it is surfacing. Went on acyclovir for a week and it improved the numbness and pain. 4 days after last dose, all came back. He said maybe u will need it as needed but did not give me a script. So now have to see my PCP.> > > > >> > > > > > At the time the headache started it was tested in the ER and was > > > > 3.1. Sorry no thumbnail b/c I was answering a question someone asked.> > > > > >> > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > > > (feel better, but not myself). sx started 3 years ago: brain fog, > > > > fatigue, pain in joints and muscles, exercise intolerence, light > > > > headed, palpitations and above mentioned. Diagnosed with > > > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > > > mg BID and BP is still labile.> > > > > > My newest K is 4.4 but do not feel any better with headache, but > > > > less cramping in my legs. Still fatigue and all the other issues.> > > > > >> > > > > > --- In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 They're getting alot more classes (lectures/grand rounds) - so I have been told by some friends in residency, on the busines aspect of medicine, on coding and billing, and topics like that. But I admit...I was being more sarcastic and cynical anyway....... On that topic, I just wish there was more pride in the art of diagnosis. THAT'S what I like about medicine - the detective work, so maybe I have a personal bias, but it seems some message about NOT looking for anything of value and just getting down to the 5 minute visit so we can herd the cattle, write a simple script, and get the next one is getting across. Hour long visits I understand aren't practical for anyone, but they don't even seem to be learning to condense and perfect the 10 minute assessment then. The directed conversation, where they turn it into what they want the problem to be, because of the path they have made in their mind that is for now the easiest and quickest to treat is so powerful and rampant that the patient side of medicine is a horrible journey. When I met with the GI on my first visit for the anemia (I failed to mention I had guiaic + stools, but also have hemorroids/fissures, so they sent me to GI for workup and colonoscopy, but it was normal and said that's not the cause) he ignored about everything I said what I could say anyway - he was polite and friendly at least - and had 2 interns or residents with him (they were only observing). Yet once he identified I had insurance and I needed a colonoscopy NOTHING else then mattered. His brain was spinning to hurry and get it scheduled, to get the lady in there who does that, and to get the machine paid for. Nothing else mattered. We literally discussed nothing else and I even told him about the lumps in the belly that come and go on the rt side and he kind of did a cursory exam, but didn't palpate the rt side, where the complaint was. I could see the interns look on their face because they could sense my skepticism since he didn't even acknowledge what he initially asked, and I told him. I tried to discuss some things, and while polite, he ignored me and he pushed the conversation every time to the colonoscopy. That was all of 5 minutes. The scheduler came in and spent about a half hour. I get it, he owned his own machine in another suite and has to pay for it, but my heavens, what's happened to the art of diagnosis? Where is it? I don't want to be one who always finds fault, and I am not usually, thus I was weak in taking care of myself all those years, but it's gotten progressively worse. I don't think it's particularly easy from either doctor or patient side, but there's certainly room to improve on it. From: StaceyF <ssminnow@...>Subject: Re: Re mouth soreshyperaldosteronism Date: Saturday, May 12, 2012, 11:20 AM It is all speculation but I started having this burning tongue (tip), inside cheeks, my lips and also lips were numb inside(like dental work when it is starting to get the feeling back) and fissures on my tongue. That was April last year. I researched it and thought burning mouth syndrome sounded like me. Myouth is dry on the front but very wet in the back. I get lesions on my tongue, and cheeks but last 2 days. Not often but the pain and dryness is always there. Now my gums are deteriorating on the bottom because of the damage of dryness. Nothing helps. Tried biotene, all of it. Started taking alpha lipoic acid and klonopin as they are to help BMS. It got a bit less burning. Oral surgeon has no clue, dentist no clue, doc gave me manic mouth wash which put my mouth on fire. This hematologist said it may be herpes and with the low immunity it is surfacing. Went on acyclovir for a week and it improved the numbness and pain. 4 days after last dose, all came back. He said maybe u will need it as needed but did not give me a script. So now have to see my PCP.> > > > >> > > > > > At the time the headache started it was tested in the ER and was > > > > 3.1. Sorry no thumbnail b/c I was answering a question someone asked.> > > > > >> > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > > > (feel better, but not myself). sx started 3 years ago: brain fog, > > > > fatigue, pain in joints and muscles, exercise intolerence, light > > > > headed, palpitations and above mentioned. Diagnosed with > > > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > > > mg BID and BP is still labile.> > > > > > My newest K is 4.4 but do not feel any better with headache, but > > > > less cramping in my legs. Still fatigue and all the other issues.> > > > > >> > > > > > --- In Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2012 Report Share Posted May 12, 2012 She only left a message that they were normal and I haven't been in to pick them up. So I don't know the iron indices specific numbers since I haven't got those labs from them yet for my personal records just that my ferritin, B12, etc was normal. The HCT was 38 (42 is the low end of this lab) few months back, then it was 36, and then 35 last time. MCV was barely microcytic the first one and then normocytic, and now it was one point above macrocytosis. So this is why we considered the B12 and she did the iron studies this last visit. But It intially pointed toward a blood loss, with GI being the likely culprit, but that doesn't seem to be it - though it could be still. But it doesn't explain the macrocytosis now though. I had never been anemic except once before when I was anemic at the end of my PA-as-yet- undiagnosed saga late 2010, and I had a simple murmur with it which I know is common due to the blood volume/viscosity, but the murmur then resolved as the anemia did back then. No murmur this time and the anemia is worse. I must mention that I was going to Flagstaff 3 times a week with all those labs( I am only going 2 days a week right now) and up there nearly all day when I go to teach and Flagstaff is at 7000 feet. So it's possible it's a tiny bt higher than what it's showing due to the altitude (so my labs may be lower than they are - only I don't physically feel REAL bad like if they were actually lower). I have those labs, but I am not looking at them at the moment, so I don't recall the MCV numbers just where they were. Though It got lower, I don't feel winded like I had been, and that's what made me think initially something was off. I was teaching and up in the front of the class while moving around very little I was getting winded. So I went in and they found the anemia. -- On Sat, 5/12/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re mouth sores"hyperaldosteronism " <hyperaldosteronism >Date: Saturday, May 12, 2012, 2:31 PM Can u detail you anemia work up?pretty standard and should lead to cause or need for bone marrow. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 12, 2012, at 1:51, Bingham <jlkbbk2003@...> wrote: What's the "burning mouth" thing? I am really curious. I have something like that that comes and goes and get's pretty extreme sometimes. It thought it was related to my anemia - that's a common B12 deficieny symptom (the most common maybe?), but my B12 doesn't show low, yet it seemed like when my anemia got a little better, so did my mouth burning. I assumed back in the day my PA and hypokalemia , and hypertyhroid, were all likely the cause of a weak immune system. When those got better so did I and had a good 2011. 2012 Has got me a bit though and I have been fighting something since new years. Got the flu and then everything seemed to turn on again. still my anemia never has gone normal on the labs for almost a year now. They can't find the cause yet and I thought the anemia was getting better because I feel more energeti,c but last visit 2 weeks ago it had gotten much worse. And this past week I can't hardly eat anything because of my mouth (sure helps with dashing though!). That comes and goes and I have always had abnormal teeth problems anyway, mom and sisters too (all of us who had hyperthyroidism). Do you have some teeth issues too? Dentists used to tell me and my parents I had no enamel and it was strange but we had no $$ to investigate further. Some thought maybe GERD but we don't know that either. Do you have herpes-like sores? I do not, but it burns all over. Lips, gums etc. and putting on some lip balm hurts like hell. Occasionally I have noticed a sore or two, but not usually. Mine has come and gone for a couple of years now. Back when my PA wasn't yet diagnosed and right after it was I wasn't always getting routine CBC's though so if it was anemia causing the sores I wouldn't have known. Honestly though no one knows what it is that causes the mouth issue. Regarding my PA, especially toward the end. I am a 45 (next week anyway) male and I have talked at length about my symptoms, but one I do not talk about a lot was this rash I had and sometimes have all over my legs and groin. It was clearly fungal (I played ALOT of sports - basketball # 1 even into adulthood so I have the 45 year-old man gymnasium fungal toenails - not THAT gross that I can't go swimming, but it's there). I got it down by being aggressive with the creams on my legs and groin, but it has reared up a little. Not as bad though. It was all over at times. All over like a diabetic gets, but I am not DM. One more funny thing....about immunity,,,,I have one solitary wart that formed a few years ago on my right index finger. I keep it because when my immune system seems weaker, the wart grows. And then shrinks. I told the doc it was my immune barometer and I up the vit C when I notice it Anyway curious as to what the doc tells you as I have had some mouth issue for a while. -- On Fri, 5/11/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re: Dr. giving gamma glabulin good credentials. I would pubmed his name to see if has ever published on it. Same to giving GG for low GG."hyperaldosteronism " <hyperaldosteronism >Date: Friday, May 11, 2012, 10:37 PM Also not my area of expertise. So I will bow out now. Keep us posted. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 11, 2012, at 21:26, StaceyF <ssminnow@...> wrote: From what I have read and understand is that it may help in some but not all. Since I am at higher risk for more serious infections and that my B lymphocytes and my T supresser cells are very low, they felt it may help. I cycle high post IGG ( 1,000) and drop down lower right before the next diose but not as low as I started showing that it is at least boosting my immunity. It is supossedly a apprx. 23 day cycle begore it leaves tour system. He said if i missed a month my levels would be back in the 500's. From the hospital I know Dr. sees many with primary immune disorders and is the most knowledgable around here. Most of his work has been in hemophilia. But he looks at the whole person instead if the condition. That is why he was my second opinion and he did further tests to determine that it would likely help. He also thinks the burning mouth problems I have is herpes that keeps coming back because of low immunity. > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > I had put them, but they do not seem> > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > simvastatin, 40 meq potassium, high dose> > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > wellbutrin xl 450mg, klonopin, alpha lipoic> > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > awake), phenergen as needed for nausea,> > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > newly added AMANTADINE for headache. I> > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > meds to prevent the headache which all> > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > ACE inhibitor until July last year and> > > > > >> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2012 Report Share Posted May 13, 2012 Maybe you need the current book I'm reading, " Every Patient Tells a Story " by , M.D. (Medical Mysteries and the Art of Diagnosis) " A must-read for anyone who has ever been a patient or is a doctor. " -ine W. Chen, author of Final Exam > > > > > > > > > > > > > At the time the headache started it was tested in the ER and was > > > > > 3.1. Sorry no thumbnail b/c I was answering a question someone asked. > > > > > > > > > > > > > > Stacey- not dx'd yet. Pheo R/o. MRI of adrenals 1.5 years ago > > > > > normal. Very Low Renin, normal aldo, ARR: 27. Hx of Low K+ 2.8-3.7, > > > > > headache, new onset HBP, 3 meds with labile BP. High PTH, high bone > > > > > ALK phos, need high doses of vit d and Magnesium to stay in normal > > > > > range, Diet: salt under 1500 and K+ near 4700 with supplementation > > > > > (feel better, but not myself). sx started 3 years ago: brain fog, > > > > > fatigue, pain in joints and muscles, exercise intolerence, light > > > > > headed, palpitations and above mentioned. Diagnosed with > > > > > hypogammaglobulinemia and getting monthly IVIG infusion. On spiro 50 > > > > > mg BID and BP is still labile. > > > > > > > My newest K is 4.4 but do not feel any better with headache, but > > > > > less cramping in my legs. Still fatigue and all the other issues. > > > > > > > > > > > > > > --- In > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2012 Report Share Posted May 13, 2012 there is a cause of anemia from drawing too much blood often. Can you estamte how much they are taking each time and back calculate the loss.CE Grim MDOn May 13, 2012, at 12:37 AM, Bingham wrote: She only left a message that they were normal and I haven't been in to pick them up. So I don't know the iron indices specific numbers since I haven't got those labs from them yet for my personal records just that my ferritin, B12, etc was normal. The HCT was 38 (42 is the low end of this lab) few months back, then it was 36, and then 35 last time. MCV was barely microcytic the first one and then normocytic, and now it was one point above macrocytosis. So this is why we considered the B12 and she did the iron studies this last visit. But It intially pointed toward a blood loss, with GI being the likely culprit, but that doesn't seem to be it - though it could be still. But it doesn't explain the macrocytosis now though. I had never been anemic except once before when I was anemic at the end of my PA-as-yet- undiagnosed saga late 2010, and I had a simple murmur with it which I know is common due to the blood volume/viscosity, but the murmur then resolved as the anemia did back then. No murmur this time and the anemia is worse. I must mention that I was going to Flagstaff 3 times a week with all those labs( I am only going 2 days a week right now) and up there nearly all day when I go to teach and Flagstaff is at 7000 feet. So it's possible it's a tiny bt higher than what it's showing due to the altitude (so my labs may be lower than they are - only I don't physically feel REAL bad like if they were actually lower). I have those labs, but I am not looking at them at the moment, so I don't recall the MCV numbers just where they were. Though It got lower, I don't feel winded like I had been, and that's what made me think initially something was off. I was teaching and up in the front of the class while moving around very little I was getting winded. So I went in and they found the anemia. -- On Sat, 5/12/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re mouth sores"hyperaldosteronism " <hyperaldosteronism >Date: Saturday, May 12, 2012, 2:31 PM Can u detail you anemia work up?pretty standard and should lead to cause or need for bone marrow. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 12, 2012, at 1:51, Bingham <jlkbbk2003@...> wrote: What's the "burning mouth" thing? I am really curious. I have something like that that comes and goes and get's pretty extreme sometimes. It thought it was related to my anemia - that's a common B12 deficieny symptom (the most common maybe?), but my B12 doesn't show low, yet it seemed like when my anemia got a little better, so did my mouth burning. I assumed back in the day my PA and hypokalemia , and hypertyhroid, were all likely the cause of a weak immune system. When those got better so did I and had a good 2011. 2012 Has got me a bit though and I have been fighting something since new years. Got the flu and then everything seemed to turn on again. still my anemia never has gone normal on the labs for almost a year now. They can't find the cause yet and I thought the anemia was getting better because I feel more energeti,c but last visit 2 weeks ago it had gotten much worse. And this past week I can't hardly eat anything because of my mouth (sure helps with dashing though!). That comes and goes and I have always had abnormal teeth problems anyway, mom and sisters too (all of us who had hyperthyroidism). Do you have some teeth issues too? Dentists used to tell me and my parents I had no enamel and it was strange but we had no $$ to investigate further. Some thought maybe GERD but we don't know that either. Do you have herpes-like sores? I do not, but it burns all over. Lips, gums etc. and putting on some lip balm hurts like hell. Occasionally I have noticed a sore or two, but not usually. Mine has come and gone for a couple of years now. Back when my PA wasn't yet diagnosed and right after it was I wasn't always getting routine CBC's though so if it was anemia causing the sores I wouldn't have known. Honestly though no one knows what it is that causes the mouth issue. Regarding my PA, especially toward the end. I am a 45 (next week anyway) male and I have talked at length about my symptoms, but one I do not talk about a lot was this rash I had and sometimes have all over my legs and groin. It was clearly fungal (I played ALOT of sports - basketball # 1 even into adulthood so I have the 45 year-old man gymnasium fungal toenails - not THAT gross that I can't go swimming, but it's there). I got it down by being aggressive with the creams on my legs and groin, but it has reared up a little. Not as bad though. It was all over at times. All over like a diabetic gets, but I am not DM. One more funny thing....about immunity,,,,I have one solitary wart that formed a few years ago on my right index finger. I keep it because when my immune system seems weaker, the wart grows. And then shrinks. I told the doc it was my immune barometer and I up the vit C when I notice it Anyway curious as to what the doc tells you as I have had some mouth issue for a while. -- On Fri, 5/11/12, Clarence Grim <lowerbp2@...> wrote: From: Clarence Grim <lowerbp2@...>Subject: Re: Re: Dr. giving gamma glabulin good credentials. I would pubmed his name to see if has ever published on it. Same to giving GG for low GG."hyperaldosteronism " <hyperaldosteronism >Date: Friday, May 11, 2012, 10:37 PM Also not my area of expertise. So I will bow out now. Keep us posted. May your pressure be low! CE Grim MS, MD Specializing in Difficult Hypertension On May 11, 2012, at 21:26, StaceyF <ssminnow@...> wrote: From what I have read and understand is that it may help in some but not all. Since I am at higher risk for more serious infections and that my B lymphocytes and my T supresser cells are very low, they felt it may help. I cycle high post IGG ( 1,000) and drop down lower right before the next diose but not as low as I started showing that it is at least boosting my immunity. It is supossedly a apprx. 23 day cycle begore it leaves tour system. He said if i missed a month my levels would be back in the 500's. From the hospital I know Dr. sees many with primary immune disorders and is the most knowledgable around here. Most of his work has been in hemophilia. But he looks at the whole person instead if the condition. That is why he was my second opinion and he did further tests to determine that it would likely help. He also thinks the burning mouth problems I have is herpes that keeps coming back because of low immunity. > > > > > > > > > > > > > > > > > > > > >> > > > > > > > > > > > > > > > > > > > > > Oh goodness no, on my original > > > I had put them, but they do not seem> > > > > > > > > > > > > > > > > > > > > > to come with. Levothyroxin, > > > simvastatin, 40 meq potassium, high dose> > > > > > > > > > > > > > > > > > > > > > magnesium, selenium, > > > wellbutrin xl 450mg, klonopin, alpha lipoic> > > > > > > > > > > > > > > > > > > > > > acid, nuvigil (to keep me > > > awake), phenergen as needed for nausea,> > > > > > > > > > > > > > > > > > > > > > fioricet ( for headache) and > > > newly added AMANTADINE for headache. I> > > > > > > > > > > > > > > > > > > > > > have been on a boat load of > > > meds to prevent the headache which all> > > > > > > > > > > > > > > > > > > > > > did not work. I was also on > > > ACE inhibitor until July last year and> > > > > >> > > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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