Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Gililan and Debra, First of all, I have not gotten any subset of mito diagnosis at this point. No, I haven't been given any steroids. Yes, I have been told years ago by an alternative doctor I may have some adrenal fatigue going on. I had one kidney removed in 2003 and they were able to leave the adrenal gland so I still have two. As for my BP. The GI doc in the hospital suggested that it was low from not eating and drinking enough. As a matter of fact, for a six week period in the summer, before the gallbladder surgery, I was having daily headaches that were pulsating and pounding and would start off when I woke up in the morning. My pressure readings were 130/90 every time they took it during this period. During my hospital stay, it averaged around 90/60. I was just evaluated over the summer for dysautonomia, but since during that period my pressure was high, they said I didn't have it. I don't have any tachycardia. When I was in the ER yesterday it was 112/72. Can you depend on the automatic blood pressure cuff? Yes, they checked my amylase and lipase. That is the confusing part, with the sphincter of oddi condition it is usual to expect these enzymes to be elevated and mine arent. The pain that I experience is most definitely triggered by eating. It has not been over the top pain, but moderate. But if I keep eating or drinking once the pain starts up, it usually keeps escalating and I am sure if I didn't stop it could get over the top. If I don't eat, it subsides and improves. Last time it took 6 days. From figuring what I feel and what I am experiencing, what triggers it and when it resolves, I am convinced it is some process of eating that is not working right. It could be more than one problem going on at the same time. The test that came back abnormal was the stomach emptying test. I had elevated LFTs after taking percocet that made me sick. There was some mention of " possible " sprue being seen on an upper GI by one doctor and another doctor said my test was normal. But I had a biopsy of the small intestine last summer that showed negative for Celiac Disease. I had a normal MRCP, and ultrasound. You can see why it is confusing. I don't know, do they have GI docs that handle complex cases? I hate to think of starting over from scratch. You know what it is like to get a new appt with a new doctor. Especially if he is any good. Adam > Adam, I am sure you might have mentioned this before and I can't find it but have any of these doctors checked your amylase levels? It sure sounds like you have pancreatitis secondary to all the manipulation of removing your gallbladder. If you don't know for sure I would check into this. > > Best Wishes, > Debra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi again Adam...you do have so much going on...my pain that i thought was food/stomach .. after loads of tests was kidney and adrenal..the gastro recognised a pattern on examination and questioning..he was proved right...did you follow up what the alternative doc. said about adrenal fatigue..that is found in mito. which is hardly surprising really.. As I am UK don't know how you would go about getting it evaluated but it may be worth following it up...I have hydrocortisone prescribed for days when I know my body is up the creek..very low dose used only 3 times in 9 months but it really helps. When adrenals really stressed get a funny headache and low backache and food gets STUCK in pit of stomach alongside other things...horrible feeling. Gilian -- In , " adamm4321 " wrote: > Hi Gililan and Debra, > > First of all, I have not gotten any subset of mito diagnosis at this > point. No, I haven't been given any steroids. Yes, I have been > told years ago by an alternative doctor I may have some adrenal > fatigue going on. I had one kidney removed in 2003 and they were > able to leave the adrenal gland so I still have two. > > As for my BP. The GI doc in the hospital suggested that it was low > from not eating and drinking enough. As a matter of fact, for a six > week period in the summer, before the gallbladder surgery, I was > having daily headaches that were pulsating and pounding and would > start off when I woke up in the morning. My pressure readings were > 130/90 every time they took it during this period. During my hospital > stay, it averaged around 90/60. > > I was just evaluated over the summer for dysautonomia, but since > during that period my pressure was high, they said I didn't have it. > I don't have any tachycardia. When I was in the ER yesterday it was > 112/72. Can you depend on the automatic blood pressure cuff? > > Yes, they checked my amylase and lipase. That is the confusing part, > with the sphincter of oddi condition it is usual to expect these > enzymes to be elevated and mine arent. > > The pain that I experience is most definitely triggered by eating. It > has not been over the top pain, but moderate. But if I keep eating > or drinking once the pain starts up, it usually keeps escalating and > I am sure if I didn't stop it could get over the top. If I don't > eat, it subsides and improves. Last time it took 6 days. From > figuring what I feel and what I am experiencing, what triggers it and > when it resolves, I am convinced it is some process of eating that is > not working right. It could be more than one problem going on at the > same time. > > The test that came back abnormal was the stomach emptying test. I had > elevated LFTs after taking percocet that made me sick. There was some > mention of " possible " sprue being seen on an upper GI by one doctor > and another doctor said my test was normal. But I had a biopsy of the > small intestine last summer that showed negative for Celiac Disease. > I had a normal MRCP, and ultrasound. > > You can see why it is confusing. I don't know, do they have GI docs > that handle complex cases? I hate to think of starting over from > scratch. You know what it is like to get a new appt with a new > doctor. Especially if he is any good. > > Adam > > > > > > > > > > Adam, I am sure you might have mentioned this before and I can't > find it but have any of these doctors checked your amylase levels? > It sure sounds like you have pancreatitis secondary to all the > manipulation of removing your gallbladder. If you don't know for > sure I would check into this. > > > > Best Wishes, > > Debra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Did they do the antibody test for Coeliac ..my biopsy was negative but the IgG antibody for it were highly positive which gastro said is gluten intolerance causing IBS..have found sometimes the biopsy readings can vary according to who does them!!! Gillian -- In , " adamm4321 " wrote: > Hi Gililan and Debra, > > First of all, I have not gotten any subset of mito diagnosis at this > point. No, I haven't been given any steroids. Yes, I have been > told years ago by an alternative doctor I may have some adrenal > fatigue going on. I had one kidney removed in 2003 and they were > able to leave the adrenal gland so I still have two. > > As for my BP. The GI doc in the hospital suggested that it was low > from not eating and drinking enough. As a matter of fact, for a six > week period in the summer, before the gallbladder surgery, I was > having daily headaches that were pulsating and pounding and would > start off when I woke up in the morning. My pressure readings were > 130/90 every time they took it during this period. During my hospital > stay, it averaged around 90/60. > > I was just evaluated over the summer for dysautonomia, but since > during that period my pressure was high, they said I didn't have it. > I don't have any tachycardia. When I was in the ER yesterday it was > 112/72. Can you depend on the automatic blood pressure cuff? > > Yes, they checked my amylase and lipase. That is the confusing part, > with the sphincter of oddi condition it is usual to expect these > enzymes to be elevated and mine arent. > > The pain that I experience is most definitely triggered by eating. It > has not been over the top pain, but moderate. But if I keep eating > or drinking once the pain starts up, it usually keeps escalating and > I am sure if I didn't stop it could get over the top. If I don't > eat, it subsides and improves. Last time it took 6 days. From > figuring what I feel and what I am experiencing, what triggers it and > when it resolves, I am convinced it is some process of eating that is > not working right. It could be more than one problem going on at the > same time. > > The test that came back abnormal was the stomach emptying test. I had > elevated LFTs after taking percocet that made me sick. There was some > mention of " possible " sprue being seen on an upper GI by one doctor > and another doctor said my test was normal. But I had a biopsy of the > small intestine last summer that showed negative for Celiac Disease. > I had a normal MRCP, and ultrasound. > > You can see why it is confusing. I don't know, do they have GI docs > that handle complex cases? I hate to think of starting over from > scratch. You know what it is like to get a new appt with a new > doctor. Especially if he is any good. > > Adam > > > > > > > > > > Adam, I am sure you might have mentioned this before and I can't > find it but have any of these doctors checked your amylase levels? > It sure sounds like you have pancreatitis secondary to all the > manipulation of removing your gallbladder. If you don't know for > sure I would check into this. > > > > Best Wishes, > > Debra > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Adam, I can identify with what you're experiencing lately. I have not been able to eat normally for more than six months now, and have been on a liquid only diet for the last two and a half months. I have constant nausea, and intense epigastric pain when I try to eat. My liver enzymes, pancreatic enzymes, and biopsies are mostly normal, but gastric emptying studies and endoscopy show significant gastic dysmotility. Motility drugs have not worked, even at maximum doses. I recently switched from a GI specialist I've been seeing for a decade, to a doc who specializes in gastroparesis and is familiar with mito. My new doc is now exploring the idea of adrenal insufficiency, or even intestinal migraine. Most likely, my poor guts are just weak and underpowered like the rest of my muscles, due to mito. It looks like I'll be on this road for a while longer before we get to the bottom of this, and find a way for me to get adequate nutrition again. Where are you located? Is there a GI doc who specializes in gastroparesis that you can consult? Theresa (Primary Carnitine Deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Gillian, No I haven't had that test yet, but they did say we are going to do it. I think it is worth looking into, since grains are what I had started back to eating after the gallbladder surgery and after a week of eating grains, the pain started back up. But I had increased my fat the day I started having pain too, so I have to look at both sources of pain. But again, I would be surprised if that was all of it. I think I might have more than one thing going on. I definitely get pain from foods that are not grain, and today I am even getting pain from liquids alone. I am going to have that blood work and will ask the doctor next Wednesday to get it done. Thanks for that idea...I had forgotten about it. Adam In , " gillianstumps " wrote: > > Did they do the antibody test for Coeliac ..my biopsy was negative > but the IgG antibody for it were highly positive which gastro said > is gluten intolerance causing IBS..have found sometimes the biopsy > readings can vary according to who does them!!! > > Gillian > > > > -- In , " adamm4321 " wrote: > > Hi Gililan and Debra, > > > > First of all, I have not gotten any subset of mito diagnosis at > this > > point. No, I haven't been given any steroids. Yes, I have been > > told years ago by an alternative doctor I may have some adrenal > > fatigue going on. I had one kidney removed in 2003 and they were > > able to leave the adrenal gland so I still have two. > > > > As for my BP. The GI doc in the hospital suggested that it was > low > > from not eating and drinking enough. As a matter of fact, for a > six > > week period in the summer, before the gallbladder surgery, I was > > having daily headaches that were pulsating and pounding and would > > start off when I woke up in the morning. My pressure readings > were > > 130/90 every time they took it during this period. During my > hospital > > stay, it averaged around 90/60. > > > > I was just evaluated over the summer for dysautonomia, but since > > during that period my pressure was high, they said I didn't have > it. > > I don't have any tachycardia. When I was in the ER yesterday it > was > > 112/72. Can you depend on the automatic blood pressure cuff? > > > > Yes, they checked my amylase and lipase. That is the confusing > part, > > with the sphincter of oddi condition it is usual to expect these > > enzymes to be elevated and mine arent. > > > > The pain that I experience is most definitely triggered by eating. > It > > has not been over the top pain, but moderate. But if I keep > eating > > or drinking once the pain starts up, it usually keeps escalating > and > > I am sure if I didn't stop it could get over the top. If I don't > > eat, it subsides and improves. Last time it took 6 days. From > > figuring what I feel and what I am experiencing, what triggers it > and > > when it resolves, I am convinced it is some process of eating that > is > > not working right. It could be more than one problem going on at > the > > same time. > > > > The test that came back abnormal was the stomach emptying test. I > had > > elevated LFTs after taking percocet that made me sick. There was > some > > mention of " possible " sprue being seen on an upper GI by one > doctor > > and another doctor said my test was normal. But I had a biopsy of > the > > small intestine last summer that showed negative for Celiac > Disease. > > I had a normal MRCP, and ultrasound. > > > > You can see why it is confusing. I don't know, do they have GI > docs > > that handle complex cases? I hate to think of starting over from > > scratch. You know what it is like to get a new appt with a new > > doctor. Especially if he is any good. > > > > Adam > > > > > > > > > > > > > > > > > > > Adam, I am sure you might have mentioned this before and I can't > > find it but have any of these doctors checked your amylase > levels? > > It sure sounds like you have pancreatitis secondary to all the > > manipulation of removing your gallbladder. If you don't know for > > sure I would check into this. > > > > > > Best Wishes, > > > Debra > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Theresa, I am sorry to hear that the motility drugs have not worked. That would have been a nice simple solution. I tried the reglan for a few days before I was back to liquids again. I was taking it with non fat milk shakes. It seemed like it was helping for awhile, with cramping after taking it, but then I wasn't getting cramping again, so I am not enthused. But while taking it, I still managed to get pain on my right side. I am also seeing a GI doc that specializes in dysmotility and is familiar with mito on this coming Wednesday. I am Boston Mass area and have had this appt for 5 months. He has quite a schedule. I didn't think a mainstream GI doc would persue an adrenal insufficiency diagnosis. Interesting. I also take Synthroid every day and my dose was lowered 5 months ago. My TSH was too high, then it tested in normal range last week. Still is a little high. I also have other hormones that have tested out too low and was invited to be in a study for HRT because of that. But I never tried it. It would be easier to think that could be effecting things than to think it is just mito cells giving up. How do you deal with constant nausea? At least I don't have that to deal with. I don't know how you do it. What are you drinking that is helping you? Do you have any sugar problems to deal with? Adam > Hi Adam, > > I can identify with what you're experiencing lately. I have not been > able to eat normally for more than six months now, and have been on a > liquid only diet for the last two and a half months. I have constant > nausea, and intense epigastric pain when I try to eat. My liver > enzymes, pancreatic enzymes, and biopsies are mostly normal, but > gastric emptying studies and endoscopy show significant gastic > dysmotility. Motility drugs have not worked, even at maximum doses. > > I recently switched from a GI specialist I've been seeing for a > decade, to a doc who specializes in gastroparesis and is familiar > with mito. My new doc is now exploring the idea of adrenal > insufficiency, or even intestinal migraine. Most likely, my poor > guts are just weak and underpowered like the rest of my muscles, due > to mito. It looks like I'll be on this road for a while longer > before we get to the bottom of this, and find a way for me to get > adequate nutrition again. > > Where are you located? Is there a GI doc who specializes in > gastroparesis that you can consult? > > Theresa > (Primary Carnitine Deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 Hi Adam, I guess I've gotten used to the constant nausea and pain the same way as everything else. Ginger ale sometimes helps the nausea. So do saltine crackers, but I can only eat a couple. Zelnorm, Reglan and Prevacid (all three at the same time, at maximum dose)didn't make any difference. My biggest problem is getting enough nutrition. Because my problem is in fatty acid metabolism, I maintain a very low fat diet anyway. I live on gatorade, slimfast, skim milk and fat free broth. It's really hard to get enough calories to maintain life, and my blood sugar drops easily. I have to consume something frequently, even though I don't want to. Even the slimfast is difficult to digest now. I'm hopeful, as you are, that we find answers soon...and effective treatments to go with them. Theresa > > Hi Adam, > > > > I can identify with what you're experiencing lately. I have not > been > > able to eat normally for more than six months now, and have been on > a > > liquid only diet for the last two and a half months. I have > constant > > nausea, and intense epigastric pain when I try to eat. My liver > > enzymes, pancreatic enzymes, and biopsies are mostly normal, but > > gastric emptying studies and endoscopy show significant gastic > > dysmotility. Motility drugs have not worked, even at maximum > doses. > > > > I recently switched from a GI specialist I've been seeing for a > > decade, to a doc who specializes in gastroparesis and is familiar > > with mito. My new doc is now exploring the idea of adrenal > > insufficiency, or even intestinal migraine. Most likely, my poor > > guts are just weak and underpowered like the rest of my muscles, > due > > to mito. It looks like I'll be on this road for a while longer > > before we get to the bottom of this, and find a way for me to get > > adequate nutrition again. > > > > Where are you located? Is there a GI doc who specializes in > > gastroparesis that you can consult? > > > > Theresa > > (Primary Carnitine Deficiency) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2004 Report Share Posted September 24, 2004 Hi Alice, Yes, I got the impression at the chat that there isn't always a lot they can do for digestive problems. That was pretty discouraging. But there is nothing you can do about what IS. I am at a point right now, that I want to be sure I know what IS. I am not there yet. I still feel the doctors are confusing and confused. It is not that they are at a point where they are saying you HAVE this and there is nothing we can do about it. They are saying we are still not sure we know what it is. How that is possible with all the tests they are able to do, I don't understand. They have taken detailed films of every part of my anatomy. They took nuclear studies to see whether bile was actually flowing from my liver into the intestine and it was. They have done blood work. I don't think they have other tests they can do aside from opening me up and getting a look. Or this ERCP test that they are offering. What is in the back of my mind is, I have had these " visual " tests of the anatomy of the digestive tract a number of times. Nothing ever LOOKS abnormal. But that doesn't mean it is actually functioning normally. I had the Gastric emptying test which does measure the emptying and the Hida Scan which supposedly shows the path the bile takes when leaving the liver and if it can proceed into the intestine. So those two tests test function. Unfortunately, they can't test function of the pancreas. I asked them that. They said there are too many secretions and too great a complexity of functions for them to test the pancreas. I guess they can't test the function of the liver either, beyond the measurement of about 6 blood tests. They cannot measure if your liver is actually producing bile in enough quantities. In the end, it will probably come down to the fact that despite tests, I may not know exactly what is wrong but only that it doesn't work. If I get to that point, then I will have to deal with it. Right now, I won't be satisfied until I have turned over every rock to find out what is wrong with my digestive tract and whether there is something that can be done or not. I do understand that doctors cannot do something about every problem. I couldn't have lived the past 25 years without understanding that. [g] As a matter of fact, if I went by my own experience, there is a lot fewer things they can do something about than they think, and when they do figure out something to do, it often makes things worse. So I am not expecting a lot, I am trying to accept what is probably inevitable at the same time I am trying to follow every avenue open to me to be sure nothing has been left undone. Thanks for reminding me not get my hopes up. Even in the face of a pretty discouraging outlook, I have found your spirit refuses to let go of every shred of hope until there is proof there is nothing to hope for. :-) Adam > Delayed Gastric Emptying is not uncommon either. As Dr Cohen said to you in the chat on Monday - GI problems are some of the hardest for the doctors to manage with a patient who is dealing with Mito. I hope you can get some relief and soon. I know you are frustrated and rightfully so. I get stressed with doctors who seem to shrug off the problems rather than tell you they don't have any answers. > > Hang in there - as hard as it may be - and hopefully you'll get beyond this and in the course of it, teach some doctors how to handle issues that are not textbook. > > Alice > > Quote Link to comment Share on other sites More sharing options...
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