Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Adam. Glad to see you made it to the group, and happy to have another member from the U.K. As I think I replied on the Café, your doctor seems to be taking a very reasonable approach, at least the way I see it. The swelling, etc. is caused not by the IgAN itself, but by the heavy proteinuria. So the treatment is to lower that proteinuria. Blood pressure medications like Coversyl do help with that. There are other types of drugs, as you know, but personally, I think it's not helpful to start on too many things at the same time, since if anything does work, neither you nor your consultant will know which it is. Pierre Hello! New to IgAN > I'm 31 years old and have just been diagnosed with IgAN (last Monday, > actually). I found my way to the igan.ca website following links from > the UK National Kidney Federation and Edinburgh Renal Unit websites. > I'm glad I did find it. After I posted on the IgAN Cafe, Pierre > suggested that I might want to introduce myself to the members of the > Yahoo! Group, so here goes! > > I first noticed problems early last year when I found it hard to put my > shoes on. Thought nothing of it at first as it was periodic. Then my > ankles and calves started to swell up. At times, mainly during last > summer which was a rather hot one for the UK, my lower legs looked like > tree trunks! I also noticed that my hands would be slightly stiff and > swollen in the mornings. Sometimes my eyes would also be very puffy. > From time to time I would have cramps in my feet or calves unlike any > other cramps I had ever had before. > > I also found myself feeling fatigued a lot of the time. At first I > thought this was simply due to stress related to my job. Emotionally I > was all over the place and found it hard to concentrate or summon the > enthusiasm to work or carry out day to day tasks. Went to see my doctor > who sent me for a blood test. This showed nothing out of the ordinary > so when I went back to the health centre, I saw another doctor (it's > hard to see the same doctor twice) who physically examined me, took my > BP and decided that perhaps I might want a second opinion. Whatever > you say Doc! > > So, I was referred to a consultant and the initial urine dip test > showed signs of blood and protein. Following more urine and blood tests > and an ultrasound scan, I was told that I was passing a lot of protein > (about 5g per day) though my other levels were fine. All fine apart > from my blood pressure which is also on the high side whenever it is > measured (164/92 when measured on the day I received my diagnosis . > > A couple of weeks later I had a kidney biopsy taken. The consultant > explained what was involved and the risks, and that it would most > likely confirm the cause of my symptoms. It went as smoothly as can be > expected bar a feeling of discomfort for about a week afterwards. > Other than the elevated blood pressure, microscopic haematuria and not > insignificant proteinuria, everything else is fine at the moment. No > damage to the kidneys, thankfully. > > I guess this is the start of a long relationship with the consultant. > He prescribed 2mg Coversyl (perindopril) to start with, to help reduce > my BP. I have to visit my doctor every couple of weeks to check my BP > and adjust the medication as necessary. I'll be seeing the consultant > again in two months after providing another 24 hour urine collection > and some more blood samples. > > My consultant did briefly mention other treatments for the proteinuria > however he was reticent about prescribing them initially because of the > possible side effects. He wants to see how well the Coversyl helps with > regard to the proteinuria. One thing at a time, for now. He also > suggested re-starting exercise, which I had stopped because I felt > tired, and avoiding excess salt in my diet. His view on my complaint > of fatigue is that it could be related to my symptoms though again > we'll see how it goes (as it may be related to something else). > > I hope I can make worthwhile contributions to this group as learn more > about my own condition. > > Best wishes, and good luck, to everyone. > > Adam > West London, UK. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Adam, Welcome to our group! I am so glad you found your way to us, although of course sorry you have been diagnosed with IgAN to even begin your search for information. Your experience is not uncommon. Many of us are diagnosed almost by accident when we go to the doctor. I am glad they discovered what is going on though. I think it is easier once you know what you are dealing with. The exercise and avoiding salt really do help. I understand how hard it is to exercise when you are so fatigued, but it honestly does help. I get on my treadmill three to four days a week no matter how bad I feel, and some days it is only my determination that gets me on it. I do always feel better though once I have finished my three miles. Did your doctor by chance say what your serum creatinine is? That is one of the key indicators we use to track renal function. One other suggestion, if your doctor has not checked you for anemia, it is worth looking at because that really does make the fatigue worse. Usually anemia is not a problem until further down the line, but I am not sure how far your renal function has declined so I thought I would mention that. Welcome again! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Adam, I'm sorry you have reason to be here, but very glad you found your way here. Here's hoping that your IgAN takes a very, very long time (like forever) to progress. Your description of your diagnosis is almost identical to many people here - especially re the edema. In our house we call the puffy eyes, the JSOB (just stumbled out of bed) look. This email list has been a wonderful thing in terms of beating the fear that goes with any chronic disease. I think you will find yourself in good company. I look forward to hearing from you. Cy Hello! New to IgAN > I'm 31 years old and have just been diagnosed with IgAN (last Monday, > actually). I found my way to the igan.ca website following links from > the UK National Kidney Federation and Edinburgh Renal Unit websites. > I'm glad I did find it. After I posted on the IgAN Cafe, Pierre > suggested that I might want to introduce myself to the members of the > Yahoo! Group, so here goes! > > I first noticed problems early last year when I found it hard to put my > shoes on. Thought nothing of it at first as it was periodic. Then my > ankles and calves started to swell up. At times, mainly during last > summer which was a rather hot one for the UK, my lower legs looked like > tree trunks! I also noticed that my hands would be slightly stiff and > swollen in the mornings. Sometimes my eyes would also be very puffy. > From time to time I would have cramps in my feet or calves unlike any > other cramps I had ever had before. > > I also found myself feeling fatigued a lot of the time. At first I > thought this was simply due to stress related to my job. Emotionally I > was all over the place and found it hard to concentrate or summon the > enthusiasm to work or carry out day to day tasks. Went to see my doctor > who sent me for a blood test. This showed nothing out of the ordinary > so when I went back to the health centre, I saw another doctor (it's > hard to see the same doctor twice) who physically examined me, took my > BP and decided that perhaps I might want a second opinion. Whatever > you say Doc! > > So, I was referred to a consultant and the initial urine dip test > showed signs of blood and protein. Following more urine and blood tests > and an ultrasound scan, I was told that I was passing a lot of protein > (about 5g per day) though my other levels were fine. All fine apart > from my blood pressure which is also on the high side whenever it is > measured (164/92 when measured on the day I received my diagnosis . > > A couple of weeks later I had a kidney biopsy taken. The consultant > explained what was involved and the risks, and that it would most > likely confirm the cause of my symptoms. It went as smoothly as can be > expected bar a feeling of discomfort for about a week afterwards. > Other than the elevated blood pressure, microscopic haematuria and not > insignificant proteinuria, everything else is fine at the moment. No > damage to the kidneys, thankfully. > > I guess this is the start of a long relationship with the consultant. > He prescribed 2mg Coversyl (perindopril) to start with, to help reduce > my BP. I have to visit my doctor every couple of weeks to check my BP > and adjust the medication as necessary. I'll be seeing the consultant > again in two months after providing another 24 hour urine collection > and some more blood samples. > > My consultant did briefly mention other treatments for the proteinuria > however he was reticent about prescribing them initially because of the > possible side effects. He wants to see how well the Coversyl helps with > regard to the proteinuria. One thing at a time, for now. He also > suggested re-starting exercise, which I had stopped because I felt > tired, and avoiding excess salt in my diet. His view on my complaint > of fatigue is that it could be related to my symptoms though again > we'll see how it goes (as it may be related to something else). > > I hope I can make worthwhile contributions to this group as learn more > about my own condition. > > Best wishes, and good luck, to everyone. > > Adam > West London, UK. > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Welcome Adam it sounds like you have a great consultant there, which is a good thing because yes you have started the beginning of a long relationship with them. My nepthrologist takes a similar approach, slow and steady to see what is working and what isn't. After all for most this disease moves at a near dead snails pace. Glad to hear your biopsy went well and shows no damage, that is great! Again welcome to the group of the few, the tired, the IgAN patients. ) (I got too much sleep last night and now I'm in a goofy mood) Amy Hello! New to IgAN I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2004 Report Share Posted January 12, 2004 Hi Adam and welcome to the group. Sorry to hear about your problems with fatigue and swelling. I hope they can be sorted out now that you are getting good medical attention. I'm also a relative newcomer to the group and I live in West London! I attend the renal clinic at Charing Cross, Hammersmith. Where do you go? When I joined the group in November 2003 I did not have a confirmed diagnosis. Although I had a biopsy in 1990 the records could not be found. At the time I was told that I leaked blood but this is normal for some people and I should not worry. There was no follow up nor any medication prescribed. Anyway, last week the results finally came through and my consultant at Charing Cross has now confirmed the diagnosis of IGA. So now I know what I'm dealing with - and apparently I've had it for 13 years. I take ramipril, fish oil and have started on irbesartan. I also take a small aspirin each day. I queried this, following some comments on this site and although I do not have high cholesterol the consultant says I should continue. My creatinine level is 142. I enjoy reading the posts and have learnt a lot more about the disease from this site than from some of the doctors I've seen over the last year! Thank you to everyone, London UK Hello! New to IgAN I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Thanks for the warm welcome. I've been reading through some of the archives and I'm sure my knowledge of this ailment will rapidly increase. To answer a few questions: : What's my serum creatinine level? No idea. The consultant has a fairly long list of numbers relating to my blood etc. but as I've had plenty of other things to come to terms with (biopsy, diagnosis, etc.) I haven't asked yet. I'll ask him in March after my second set of 24 hour urine and blood tests. All I know is that my levels are fine apart from the ones I've explicitly mentioned. I'll ask about anemia as well with regard to fatigue; though the results of biopsy hadn't indicated any damage (or at least that's what I remember). : What hospital am I attending? Well, I don't strictly live in West London (my brother does, however). As this is an international group it's easier to say that than " near Slough " . Of course, there is also the embarrassment of admitting to living near Slough. Such is life I'm attending Wexham Park Hospital and the consultant I'm seeing works in General Surgery. (BTW, Ozzy Osbourne was in, after his quad-bike accident, when I had my biopsy). To date, everything the consultant has told me has been echoed by what I've read here, on igan.ca, and some other UK sites (NKF and Edinburgh Renal Unit). When I was diagnosed, the consultant gave me a four page A4 document about IgAN which talks about fish oil, tonsils etc. I'm as happy as I can be given the circumstances. Cheers, Adam " Near Slough " , UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Hi Adam, I'm sure Slough can't be that bad! (Mind you I've never visited!) I'm in Ealing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Now, don't ask me why, I don't know, but Ealing just sounds better than Slough Pierre Re: Hello! New to IgAN > Hi Adam, > > I'm sure Slough can't be that bad! (Mind you I've never visited!) I'm in Ealing. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2004 Report Share Posted January 13, 2004 Now, don't ask me why, I don't know, but Ealing just sounds better than Slough Pierre Re: Hello! New to IgAN > Hi Adam, > > I'm sure Slough can't be that bad! (Mind you I've never visited!) I'm in Ealing. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Adam, Although I'm sorry you've had to find your way in here, it is nice to see more people from the UK in here. I'm fairly new here also and am expecting a referral to a Nephrologist when I next visit my GP. All the signs suggest IgAN but there's no actual diagnosis as yet! Would be interested to here your story as it unfold. Regards Dave Hello! New to IgAN I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Adam, Although I'm sorry you've had to find your way in here, it is nice to see more people from the UK in here. I'm fairly new here also and am expecting a referral to a Nephrologist when I next visit my GP. All the signs suggest IgAN but there's no actual diagnosis as yet! Would be interested to here your story as it unfold. Regards Dave Hello! New to IgAN I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Adam, Although I'm sorry you've had to find your way in here, it is nice to see more people from the UK in here. I'm fairly new here also and am expecting a referral to a Nephrologist when I next visit my GP. All the signs suggest IgAN but there's no actual diagnosis as yet! Would be interested to here your story as it unfold. Regards Dave Hello! New to IgAN I'm 31 years old and have just been diagnosed with IgAN (last Monday, actually). I found my way to the igan.ca website following links from the UK National Kidney Federation and Edinburgh Renal Unit websites. I'm glad I did find it. After I posted on the IgAN Cafe, Pierre suggested that I might want to introduce myself to the members of the Yahoo! Group, so here goes! I first noticed problems early last year when I found it hard to put my shoes on. Thought nothing of it at first as it was periodic. Then my ankles and calves started to swell up. At times, mainly during last summer which was a rather hot one for the UK, my lower legs looked like tree trunks! I also noticed that my hands would be slightly stiff and swollen in the mornings. Sometimes my eyes would also be very puffy. From time to time I would have cramps in my feet or calves unlike any other cramps I had ever had before. I also found myself feeling fatigued a lot of the time. At first I thought this was simply due to stress related to my job. Emotionally I was all over the place and found it hard to concentrate or summon the enthusiasm to work or carry out day to day tasks. Went to see my doctor who sent me for a blood test. This showed nothing out of the ordinary so when I went back to the health centre, I saw another doctor (it's hard to see the same doctor twice) who physically examined me, took my BP and decided that perhaps I might want a second opinion. Whatever you say Doc! So, I was referred to a consultant and the initial urine dip test showed signs of blood and protein. Following more urine and blood tests and an ultrasound scan, I was told that I was passing a lot of protein (about 5g per day) though my other levels were fine. All fine apart from my blood pressure which is also on the high side whenever it is measured (164/92 when measured on the day I received my diagnosis . A couple of weeks later I had a kidney biopsy taken. The consultant explained what was involved and the risks, and that it would most likely confirm the cause of my symptoms. It went as smoothly as can be expected bar a feeling of discomfort for about a week afterwards. Other than the elevated blood pressure, microscopic haematuria and not insignificant proteinuria, everything else is fine at the moment. No damage to the kidneys, thankfully. I guess this is the start of a long relationship with the consultant. He prescribed 2mg Coversyl (perindopril) to start with, to help reduce my BP. I have to visit my doctor every couple of weeks to check my BP and adjust the medication as necessary. I'll be seeing the consultant again in two months after providing another 24 hour urine collection and some more blood samples. My consultant did briefly mention other treatments for the proteinuria however he was reticent about prescribing them initially because of the possible side effects. He wants to see how well the Coversyl helps with regard to the proteinuria. One thing at a time, for now. He also suggested re-starting exercise, which I had stopped because I felt tired, and avoiding excess salt in my diet. His view on my complaint of fatigue is that it could be related to my symptoms though again we'll see how it goes (as it may be related to something else). I hope I can make worthwhile contributions to this group as learn more about my own condition. Best wishes, and good luck, to everyone. Adam West London, UK. To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: http://www.igan.ca/id62.htm Thank you ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2004 Report Share Posted January 16, 2004 Hi Sally ) Although I'm not 100% positive, I thought I read on the Edrin site that fatigue was a symptom? Dave RE: Hello! New to IgAN Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Where is this? As far as I know all of us in the UK on this site are having fatigue not associated with IgA.....but brilliant if there's a change of view. Sally UK Re: Hello! New to IgAN Hi Sally ) Although I'm not 100% positive, I thought I read on the Edrin site that fatigue was a symptom? Dave RE: Hello! New to IgAN Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Where is this? As far as I know all of us in the UK on this site are having fatigue not associated with IgA.....but brilliant if there's a change of view. Sally UK Re: Hello! New to IgAN Hi Sally ) Although I'm not 100% positive, I thought I read on the Edrin site that fatigue was a symptom? Dave RE: Hello! New to IgAN Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Where is this? As far as I know all of us in the UK on this site are having fatigue not associated with IgA.....but brilliant if there's a change of view. Sally UK Re: Hello! New to IgAN Hi Sally ) Although I'm not 100% positive, I thought I read on the Edrin site that fatigue was a symptom? Dave RE: Hello! New to IgAN Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Another Brit waves hello! EdRen lists tiredness as a symptom of nephrotic syndrome. http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/NephroticShort.html The consultant didn't say that I had this though my level of proteinuria and bouts of swollen of feet, ankles, legs, hands and sometimes face would suggest that this might be the cause of my tiredness. Whatever happens I'll make sure that I keep raising the issue with my GP and consultant. Cheers, Adam > Hi Sally ) > > Although I'm not 100% positive, I thought I read on the Edrin site > that fatigue was a symptom? > > Dave > RE: Hello! New to IgAN > > > Hello Adam, > > Your symptoms sound pretty familiar! > Particularly the fatigue which in the > UK isn't accepted yet as a symptom, > so to get a 'could be related' is not to > be underestimated in any way! > > For anyone who hasn't visited the Polls > section, I've been running one on fatigue, > so please have a look and make your contribution. > > Good Luck Adam > Sally UK > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Another Brit waves hello! EdRen lists tiredness as a symptom of nephrotic syndrome. http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/NephroticShort.html The consultant didn't say that I had this though my level of proteinuria and bouts of swollen of feet, ankles, legs, hands and sometimes face would suggest that this might be the cause of my tiredness. Whatever happens I'll make sure that I keep raising the issue with my GP and consultant. Cheers, Adam > Hi Sally ) > > Although I'm not 100% positive, I thought I read on the Edrin site > that fatigue was a symptom? > > Dave > RE: Hello! New to IgAN > > > Hello Adam, > > Your symptoms sound pretty familiar! > Particularly the fatigue which in the > UK isn't accepted yet as a symptom, > so to get a 'could be related' is not to > be underestimated in any way! > > For anyone who hasn't visited the Polls > section, I've been running one on fatigue, > so please have a look and make your contribution. > > Good Luck Adam > Sally UK > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hello Dave, Another Brit waves hello! EdRen lists tiredness as a symptom of nephrotic syndrome. http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/NephroticShort.html The consultant didn't say that I had this though my level of proteinuria and bouts of swollen of feet, ankles, legs, hands and sometimes face would suggest that this might be the cause of my tiredness. Whatever happens I'll make sure that I keep raising the issue with my GP and consultant. Cheers, Adam > Hi Sally ) > > Although I'm not 100% positive, I thought I read on the Edrin site > that fatigue was a symptom? > > Dave > RE: Hello! New to IgAN > > > Hello Adam, > > Your symptoms sound pretty familiar! > Particularly the fatigue which in the > UK isn't accepted yet as a symptom, > so to get a 'could be related' is not to > be underestimated in any way! > > For anyone who hasn't visited the Polls > section, I've been running one on fatigue, > so please have a look and make your contribution. > > Good Luck Adam > Sally UK > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Sally ... I looked - the article Adam posted isn't the one I thought I remember - must be information overload ... I was sure it was that - sorry for the bum steer! Dave RE: Hello! New to IgAN Hello Adam, Your symptoms sound pretty familiar! Particularly the fatigue which in the UK isn't accepted yet as a symptom, so to get a 'could be related' is not to be underestimated in any way! For anyone who hasn't visited the Polls section, I've been running one on fatigue, so please have a look and make your contribution. Good Luck Adam Sally UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2004 Report Share Posted January 17, 2004 Hi Adam ... no it was an IGA specific article I read must have been somewhere else ... I'll maybe have a look later! Yeah I will too - mind you I've always loved my sleep time lol Dave RE: Hello! New to IgAN > > > Hello Adam, > > Your symptoms sound pretty familiar! > Particularly the fatigue which in the > UK isn't accepted yet as a symptom, > so to get a 'could be related' is not to > be underestimated in any way! > > For anyone who hasn't visited the Polls > section, I've been running one on fatigue, > so please have a look and make your contribution. > > Good Luck Adam > Sally UK > > > > Quote Link to comment Share on other sites More sharing options...
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