Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi Dale, A warm welcome to you. I am very happy that your wife and mom " shoved " you off to the neph's office. A biopsy is the only way to truly confirm IgAN and yes, there are medications that can help. Please keep us posted. Hugs, Rita PS Give your wife and Mom an extra special hug - they did good! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi Dale. Welcome to the group. A very long time ago, in my distant past (during the disco era, to be exact), I had a bad flu which eventually took me to the local clinic, where they found I had blood in my urine. This was the only symptom I had at the time, so, not too much happened. A bit later on, I applied for some life insurance (I was married by then) and was rejected because I still had that blood in the urine. About 10 years after that, I started having high blood pressure, and by 1993, my doctor decided it was time for a biopsy. This is when I knew for sure I had IgAN. Before that, it was just " some kind of mild glomerulonephritis " , one that would " probably never amount to anything " . Anyway, another 9 years passed after the biopsy before I started dialysis. From that first blood in the urine discovery (never had dark urine though, always microscopic in my case) until the start of dialysis, 25 years went by. I had a normal life through most of those years, even though I pretty much ignored the potential kidney problem entirely for the first decade, never even seeing a doctor once during that time. I was only forced to pay more attention to it once I started having to be treated for high blood pressure in the early 90's. This is often how it is with IgAN. It doesn't look too serious when it's mild and it isn't complicated by heavier proteinuria. But, it does carry the potential to be quite serious at some point in the future. My two kids are in their early to mid-20s now, and no sign of IgAN yet. I guess it's still a possibility though. Do you think they listen to their father about the need the be aware of it? I don't think so! Anyway, good luck with your test. It's true that there's no actual surefire treatment for IgAN at present, but there are ways to manage it and to minimize the risk of it progressing. Unfortunately, some of them might be worse than the disease. One thing which is fairly certain is that good control of blood pressure to 120/80 or less with the appropriate blood pressure medication will at the very least help prevent the added burden of high blood pressure on the kidneys. This is where I failed miserably. People who control their blood pressure now may well go far longer than I did before they need dialysis, if they ever do. Nephrologists deal with so much severe high blood pressure on a daily basis that they might not make a big deal out of moderately elevated BP. Your job is to make sure they don't let this slip. Pierre New member > Hello, > My name is Dale. When I lived in Durham, N.C. I had the flu > w/ a high fever and so on. I went to a doctor to get treated for the > flu and when he took a urine sample he was very concerned. Yeah it > was dark almost like coffee. I was never concerned about this I just > thought it was from drinking tea, soda, etc. Well then the trips to > the Neph began. Blood work, 24 hr. urine sample, etc. The Neph told > me he was almost 100% sure it was IGAN but could be for sure unless > a biopsy was performed. I asked him if after doing the biopsy and > knew for sure it was IGAN what could be done? Well then he tells me > there isn't any real treatment for the disease. Well being 17 yrs. > old I didn't see any reason why I should have the biopsy done if > there's no treatment. Now I'm 34 yrs. old married w/ (2) sons 10 > yrs. old and a 3 yr. old. I've lived a very active life and haven't > let my health slow me down. My job is very physical and hot. We now > live in South Florida. I've noticed here lately that the pains last > longer, darker urine, puffy hands, face and I don't feel as well as > I normally do. I was shoved (push isn't strong enough) into going to > the Neph by my wife and mother. I'd never tell them that. I went > today to visit my new Neph. After examining me and reading my info. > from my previous Neph (1989) he agreed it's probably IGAN. But to be > sure we need more test....24 hr. urine test, blood work, ultrasound > and probably biopsy. I now have 2 sons that need to know what to > look for since IGAN may be hereditary. There's my short story about > my experience with IGAN. I hope this helps others with all the > unknowns. I'll keep you posted as the results from the test come in. > Take care, Dale > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2005 Report Share Posted August 17, 2005 Hi Dale, A very warm welcome to you too! Thank you for sharing your story. Your experience is similar to mine in that I first had symptoms as a young teen, then no follow up until my 30s when I had my first biopsy. I am glad you went to see a Neph since it sounds as if your symptoms are more troublesome now. Please do let us know when you find out your results. I hope they determine that you are stable. You are blessed to have a mom and wife that care about you so much that they shoved you into going to see the doctor :-) Welcome again! In a message dated 8/17/2005 4:12:15 P.M. Pacific Daylight Time, Crash25744@... writes: There's my short story about my experience with IGAN. I hope this helps others with all the unknowns. I'll keep you posted as the results from the test come in. Take care, Dale Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 i just wanted to say hello and that i am glad to find someone to talk too. i could never have imagined in the past, how this feels until now, and there is really no words that really explains how bad it is to other people. anyway i just glad i found your group to vent. thanks glitter Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 WELCOME, TRACY! Glad you are here! Dot --- TRACY BRANTLEY glitter_62269@...> wrote: > i just wanted to say hello and that i am glad to > find someone to talk too. i could never have > imagined in the past, how this feels until now, and > there is really no words that really explains how > bad it is to other people. anyway i just glad i > found your group to vent. > > thanks > glitter > > > > > --------------------------------- > Pinpoint customers who are looking for what you > sell. ________________________________________________________________________________\ ____Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2007 Report Share Posted May 22, 2007 Glad you are here. The folks on this forum have tons of knowledge and you will learn a lot! Lori new member i just wanted to say hello and that i am glad to find someone to talk too. i could never have imagined in the past, how this feels until now, and there is really no words that really explains how bad it is to other people. anyway i just glad i found your group to vent. thanks glitter Pinpoint customers who are looking for what you sell. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Ask your gyn to test you for Cervicitis (inflamed cervic that causes discharge similar to yeast -- discharge was my only symptom). I was diagnosed with that and am now working with my gyn to take care of it (via cryotherapy because the antibiotic did not help as it only has a 50/50 chance of helping). Hi All, Great to relate to so many of your posts and know it's not just me. I had my 2nd child 16 months ago, all very natural few stiches. 3 months after I got my first bout or thrush and this has continued to come and ago however along with this I have pain when something brushes against my clitoris, some days are better than others and pain in my vulva is always on the right had side along with occasional sorness in the vagina opening. I've seen two Gynae's who both say I have vaginal dryness due to low estrogen, apparantly I have a pail and brittle vagina but looks perfectly normal. They prescribed local estrogen that made things a million times worse so i stopped that. The Gyane said I had a reaction to the compound so now I'm back to square one. I treated myself with Diflucan for 3 months every week and although haven't had thrush still have the constant irritation and sometimes extreme pain especially in my clitoris. They want me to try an HRT patch but I'm unsure as my mother died at 38 from breast cancer that estrogen dominant. I just can't believe vaginal dryness would cause so much pain? I'm only 37. My GP said my Estrogen test was within range although I did have a slightly elevated FSH of 17. This month has been slightly better but still not great. I'm waiting for an appointment with the dermatologist which I should get within the next 6 weeks but wondered if anyone else had similar problems purely through yeast or dryness? I have had splitting during intercourse at the bottom which now looks permanently bruised but now just gets sore for a few days. I did the candida diet for about 3 months but gave into the biscuits again last month as I got so thin, I'm not a very big person at the best of times. This month I had an almost constant discharge and was sore, I'm waiting the swab results but am convinced they'll say nothing. I would just love to have a day when I didn't think about my bits sorry ramble on V Quote Link to comment Share on other sites More sharing options...
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