Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Dear Carolyn Well is a pattern emerging here? Yes I have had loads of bladder infections, during teen years to date, hence why I am seeing a Urologist now. In fact it was my Urologist who referred me to a Nephrologist, after he couldnt explain the gross heamaturia, which of course then led to a renal biopsy and a diagnosis of IGAN. Antibiotic treatment helped for a few days, then the infections flared up again. I sort of keep this under control now by drinking Cranberry Juice, but it doesn't help with the flank pain after sexual activity! The status now is that a recent CT scan showed a renal cyst and lots of small stones in both kidneys, but no-one can tell me if this is the cause for the pain......I personally suspect that the stones don't help me. As for your episodes with the drug overdoses, hey don't beat yourself up about that, we have all done things in our earlier years we wouldnt do now, as to whether it contributed to your current problems, I would say highly unlikely, but I am no medic so I guess that one will never be solved. What is important now is that you are here, part of a group who cares and understands, and seem to have a strong desire (like the rest of us), to be knowledeable in this disease, knowledge to me is power, the more I hear about people's experiences, the less I feel that I am going NUTS. I promise to keep everyone updated on events, and maybe one day the medics will start to listen to their patients and come up with the answers to our seemingly neverending questions, but I wont hold my breath on that one LOL. Take care Carolyn ok. Best wishes causes : I would also like to add that I had numerous bladder infections from early childhood until the birth of my 2 nd child. During adolecence and early twenties I had a bladder infection at least twice a month and one leading to a kidney infection. They could never get a handle on this. Did anyone else here have a lot of bladder infections before getting diagnosed with IgA? Also in the past during my adolecent years- I was sort of going through an ( I am immortal/ I am self-destructive mode) and I did two pretty dumb thing-once I took a large overdose on tylenol, sudefed and some other stuff I could find in my parents medicine cabinet. They took me the hospital and pumped my stomach. A couple years down the road I did another overdose-using my ex boyfriends entire botte of expired antidepressants and they did not find me until it was too late to pump me and give me charcoal over 12 hours-all they could do was monitor my heart and vitals. I often wondered if these two stupid actions plus the multiple bladder infections could have done something to my kidneys. BOY I WAS DUMB when I was a teen. I did not have a continuous doctor at the time so I was not consistently followed up. The er never really said much to me about it. Carolyn Delicate matter? > > > > Hi Friends > > > > Me again? Perhaps you can see why I said I was challenging to my > > Neph......always questions? Now this is a delicate matter, and > particulary > > aimed at the ladies with IGAN.....has anyone noticed that sexual activity > > has become painful since diagnosis? I suffer with real bad flank pain > > afterwards, and low abdomen and groin pain......admittedly I have a urine > > dynamic test coming up in January to check bladder function etc.......my > > Neph said he has heard of similar complaints before now, but surprise > > surprise, it has not been proven medically that IGAN can cause sexual > > activity pain? But he did hint that IGAN can clash with hormone balances, > > which can cause this type of problem. Thoughts anyone? > > > > Has taken me ages to pluck up the courage to post this, but I have done it > > now. > > > > Thanks > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 On the subject of causes, I've had occasion to do a lot of thinking over 24 years, and I never did really find an association with any particular thing I did. My feeling now about things like that is that you live in the here and now. In other words, there's enough to worry about in the present without having to worry about the past too. Even if a person did do something that they know "caused" the IgAN (highly unlikely, by the way), you can't undo the past.. Pierre Malt wrote: Dear Carolyn Well is a pattern emerging here? Yes I have had loads of bladder infections, during teen years to date, hence why I am seeing a Urologist now. In fact it was my Urologist who referred me to a Nephrologist, after he couldnt explain the gross heamaturia, which of course then led to a renal biopsy and a diagnosis of IGAN. Antibiotic treatment helped for a few days, then the infections flared up again. I sort of keep this under control now by drinking Cranberry Juice, but it doesn't help with the flank pain after sexual activity! The status now is that a recent CT scan showed a renal cyst and lots of small stones in both kidneys, but no-one can tell me if this is the cause for the pain......I personally suspect that the stones don't help me. As for your episodes with the drug overdoses, hey don't beat yourself up about that, we have all done things in our earlier years we wouldnt do now, as to whether it contributed to your current problems, I would say highly unlikely, but I am no medic so I guess that one will never be solved. What is important now is that you are here, part of a group who cares and understands, and seem to have a strong desire (like the rest of us), to be knowledeable in this disease, knowledge to me is power, the more I hear about people's experiences, the less I feel that I am going NUTS. I promise to keep everyone updated on events, and maybe one day the medics will start to listen to their patients and come up with the answers to our seemingly neverending questions, but I wont hold my breath on that one LOL. Take care Carolyn ok. Best wishes causes : I would also like to add that I had numerous bladder infections from early childhood until the birth of my 2 nd child. During adolecence and early twenties I had a bladder infection at least twice a month and one leading to a kidney infection. They could never get a handle on this. Did anyone else here have a lot of bladder infections before getting diagnosed with IgA? Also in the past during my adolecent years- I was sort of going through an ( I am immortal/ I am self-destructive mode) and I did two pretty dumb thing-once I took a large overdose on tylenol, sudefed and some other stuff I could find in my parents medicine cabinet. They took me the hospital and pumped my stomach. A couple years down the road I did another overdose-using my ex boyfriends entire botte of expired antidepressants and they did not find me until it was too late to pump me and give me charcoal over 12 hours-all they could do was monitor my heart and vitals. I often wondered if these two stupid actions plus the multiple bladder infections could have done something to my kidneys. BOY I WAS DUMB when I was a teen. I did not have a continuous doctor at the time so I was not consistently followed up. The er never really said much to me about it. Carolyn Delicate matter? > > > > Hi Friends > > > > Me again? Perhaps you can see why I said I was challenging to my > > Neph......always questions? Now this is a delicate matter, and > particulary > > aimed at the ladies with IGAN.....has anyone noticed that sexual activity > > has become painful since diagnosis? I suffer with real bad flank pain > > afterwards, and low abdomen and groin pain......admittedly I have a urine > > dynamic test coming up in January to check bladder function etc.......my > > Neph said he has heard of similar complaints before now, but surprise > > surprise, it has not been proven medically that IGAN can cause sexual > > activity pain? But he did hint that IGAN can clash with hormone balances, > > which can cause this type of problem. Thoughts anyone? > > > > Has taken me ages to pluck up the courage to post this, but I have done it > > now. > > > > Thanks > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 It' funny you talk about the drugs as a teen. When we were at dinner last night, said, " Now that I can't drink anymore, here's what I used to do " and he went on to tell us how he and his friends would binge drink. He said if you didn't do that, you weren't cool! I wonder,too, if that had anything to do with what's happening now. As parents, my husband and I never saw him that way. > >Reply-To: iga-nephropathyegroups >To: <iga-nephropathyegroups> >Subject: RE: causes >Date: Mon, 1 Jan 2001 09:02:25 -0000 > >Dear Carolyn > >Well is a pattern emerging here? Yes I have had loads of bladder >infections, during teen years to date, hence why I am seeing a Urologist >now. In fact it was my Urologist who referred me to a Nephrologist, after >he couldnt explain the gross heamaturia, which of course then led to a >renal >biopsy and a diagnosis of IGAN. Antibiotic treatment helped for a few >days, >then the infections flared up again. I sort of keep this under control now >by drinking Cranberry Juice, but it doesn't help with the flank pain after >sexual activity! The status now is that a recent CT scan showed a renal >cyst and lots of small stones in both kidneys, but no-one can tell me if >this is the cause for the pain......I personally suspect that the stones >don't help me. > >As for your episodes with the drug overdoses, hey don't beat yourself up >about that, we have all done things in our earlier years we wouldnt do now, >as to whether it contributed to your current problems, I would say highly >unlikely, but I am no medic so I guess that one will never be solved. What >is important now is that you are here, part of a group who cares and >understands, and seem to have a strong desire (like the rest of us), to be >knowledeable in this disease, knowledge to me is power, the more I hear >about people's experiences, the less I feel that I am going NUTS. > >I promise to keep everyone updated on events, and maybe one day the medics >will start to listen to their patients and come up with the answers to our >seemingly neverending questions, but I wont hold my breath on that one LOL. > >Take care Carolyn ok. > >Best wishes > > > > > causes > > >: > I would also like to add that I had numerous bladder infections from >early >childhood until the birth of my 2 nd child. During adolecence and early >twenties I had a bladder infection at least twice a month and one leading >to >a kidney infection. They could never get a handle on this. Did anyone else >here have a lot of bladder infections before getting diagnosed with IgA? >Also in the past during my adolecent years- I was sort of going through an >( I am immortal/ I am self-destructive mode) and I did two pretty dumb >thing-once I took a large overdose on tylenol, sudefed and some other stuff >I could find in my parents medicine cabinet. They took me the hospital and >pumped my stomach. A couple years down the road I did another >overdose-using >my ex boyfriends entire botte of expired antidepressants and they did not >find me until it was too late to pump me and give me charcoal over 12 >hours-all they could do was monitor my heart and vitals. I often wondered >if these two stupid actions plus the multiple bladder infections could have >done something to my kidneys. BOY I WAS DUMB when I was a teen. I did not >have a continuous doctor at the time so I was not consistently followed up. >The er never really said much to me about it. >Carolyn > > Delicate matter? > > > > > > > Hi Friends > > > > > > Me again? Perhaps you can see why I said I was challenging to my > > > Neph......always questions? Now this is a delicate matter, and > > particulary > > > aimed at the ladies with IGAN.....has anyone noticed that sexual >activity > > > has become painful since diagnosis? I suffer with real bad flank pain > > > afterwards, and low abdomen and groin pain......admittedly I have a >urine > > > dynamic test coming up in January to check bladder function >etc.......my > > > Neph said he has heard of similar complaints before now, but surprise > > > surprise, it has not been proven medically that IGAN can cause sexual > > > activity pain? But he did hint that IGAN can clash with hormone >balances, > > > which can cause this type of problem. Thoughts anyone? > > > > > > Has taken me ages to pluck up the courage to post this, but I have >done >it > > > now. > > > > > > Thanks > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Pamela, When I first started to have symptoms of IgAN, I rarely drank at all, and when I did for social reasons, it was one beer or one drink and that was it. Later on, I did eventually sometimes binge drink (no excuses, but hard not to in the military). I can tell you with absolute certainty that it never affected the IgAN I already had in any way whatsoever. My serum creatinine and proteinuria were more or less stable all that time, although it may have raised my blood pressure a bit. It's only been in the past couple of years that my serum creatinine has more than doubled, and I haven't had more than an occasional beer or glass of wine since 1994. Go figure. I'm thinking that maybe it would be better if I did drink more, but don't tell your son I said that Anyway, I doubt that drinking had anything to do with your son's condition, except perhaps that excessive drinking might make a person a bit run down and more susceptible to catching viruses etc. What I think happens in a case like your son is that the person already has a mild, undetected case of chronic IgAN, and then for some reason, it flares up into an acute nephrotic or nephritic episode. In Japan, they have many more cases of IgAN than we do, but that's because they actually screen children for it. So the more you look, the more you find people with IgAN. It's probably just as common in the West, but it's only detected by the time people have more advanced symptoms. Pierre Pamela Zaheri wrote: It' funny you talk about the drugs as a teen. When we were at dinner last night, said, "Now that I can't drink anymore, here's what I used to do" and he went on to tell us how he and his friends would binge drink. He said if you didn't do that, you weren't cool! I wonder,too, if that had anything to do with what's happening now. As parents, my husband and I never saw him that way. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2001 Report Share Posted January 1, 2001 Pierre, you are so wise. I also feel the same way about the past. By the way, I don't think anything can " cause " the IgA, but just maybe it could have precipated it---but again, it would have appeared sooner or later anyway. > >Reply-To: iga-nephropathyegroups >To: iga-nephropathyegroups >Subject: Re: causes >Date: Mon, 01 Jan 2001 14:39:15 -0500 > >On the subject of causes, I've had occasion to do a lot of thinking over >24 years, and I never did really find an association with any particular >thing I did. My feeling now about things like that is that you live in >the here and now. In other words, there's enough to worry about in the >present without having to worry about the past too. Even if a person did >do something that they know " caused " the IgAN (highly unlikely, by the >way), you can't undo the past.. >Pierre > > Malt wrote: > > > Dear Carolyn > > > > Well is a pattern emerging here? Yes I have had loads of bladder > > infections, during teen years to date, hence why I am seeing a > > Urologist > > now. In fact it was my Urologist who referred me to a Nephrologist, > > after > > he couldnt explain the gross heamaturia, which of course then led to a > > renal > > biopsy and a diagnosis of IGAN. Antibiotic treatment helped for a few > > days, > > then the infections flared up again. I sort of keep this under > > control now > > by drinking Cranberry Juice, but it doesn't help with the flank pain > > after > > sexual activity! The status now is that a recent CT scan showed a > > renal > > cyst and lots of small stones in both kidneys, but no-one can tell me > > if > > this is the cause for the pain......I personally suspect that the > > stones > > don't help me. > > > > As for your episodes with the drug overdoses, hey don't beat yourself > > up > > about that, we have all done things in our earlier years we wouldnt do > > now, > > as to whether it contributed to your current problems, I would say > > highly > > unlikely, but I am no medic so I guess that one will never be solved. > > What > > is important now is that you are here, part of a group who cares and > > understands, and seem to have a strong desire (like the rest of us), > > to be > > knowledeable in this disease, knowledge to me is power, the more I > > hear > > about people's experiences, the less I feel that I am going NUTS. > > > > I promise to keep everyone updated on events, and maybe one day the > > medics > > will start to listen to their patients and come up with the answers to > > our > > seemingly neverending questions, but I wont hold my breath on that one > > LOL. > > > > Take care Carolyn ok. > > > > Best wishes > > > > > > > > > > causes > > > > > > : > > I would also like to add that I had numerous bladder infections from > > early > > childhood until the birth of my 2 nd child. During adolecence and > > early > > twenties I had a bladder infection at least twice a month and one > > leading to > > a kidney infection. They could never get a handle on this. Did anyone > > else > > here have a lot of bladder infections before getting diagnosed with > > IgA? > > Also in the past during my adolecent years- I was sort of going > > through an > > ( I am immortal/ I am self-destructive mode) and I did two pretty dumb > > > > thing-once I took a large overdose on tylenol, sudefed and some other > > stuff > > I could find in my parents medicine cabinet. They took me the hospital > > and > > pumped my stomach. A couple years down the road I did another > > overdose-using > > my ex boyfriends entire botte of expired antidepressants and they did > > not > > find me until it was too late to pump me and give me charcoal over 12 > > hours-all they could do was monitor my heart and vitals. I often > > wondered > > if these two stupid actions plus the multiple bladder infections could > > have > > done something to my kidneys. BOY I WAS DUMB when I was a teen. I did > > not > > have a continuous doctor at the time so I was not consistently > > followed up. > > The er never really said much to me about it. > > Carolyn > > > > Delicate matter? > > > > > > > > > > Hi Friends > > > > > > > > Me again? Perhaps you can see why I said I was challenging to my > > > > Neph......always questions? Now this is a delicate matter, and > > > particulary > > > > aimed at the ladies with IGAN.....has anyone noticed that sexual > > activity > > > > has become painful since diagnosis? I suffer with real bad flank > > pain > > > > afterwards, and low abdomen and groin pain......admittedly I have > > a > > urine > > > > dynamic test coming up in January to check bladder function > > etc.......my > > > > Neph said he has heard of similar complaints before now, but > > surprise > > > > surprise, it has not been proven medically that IGAN can cause > > sexual > > > > activity pain? But he did hint that IGAN can clash with hormone > > balances, > > > > which can cause this type of problem. Thoughts anyone? > > > > > > > > Has taken me ages to pluck up the courage to post this, but I have > > done > > it > > > > now. > > > > > > > > Thanks > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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