Guest guest Posted July 15, 2001 Report Share Posted July 15, 2001 There are kidney problems on both my parents sides but not them directly. For me, there is a more direct genetic connection. The funny thing is, Grandma simply had one kidney quit. Dad didn't go on dialysis until a couple days before he died, and I got diagnosed with renal insufficiency at 17 (biopsy at 19 proving I had IgA disease). Robin s About Transplantation: organ donation and transplantation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2001 Report Share Posted July 15, 2001 Hi Kare - sorrry to hear about your mother. I am also sure of the genetic connection. There are kidney problems on both my parents sides but not them directly. Still looking into this though. From: karen@... Reply-To: iga-nephropathy To: iga-neph nephropathy] Information Date: Thu, 12 Jul 2001 17:23:08 -0000 Hi Guys Apologies if this message is a duplication of one I tried to post last night. I had a phone call from my mother last night, who has been unwell for the last couple of months. She had a really nasty viral infection, which put her in her sick bed for 2 weeks. One of her symptoms was high blood in her urine. She informed me that she has always had this since her childhood days, she is now 59. She also haemhorrages badly after any procedure, and this blood in her urine was always queried, but never followed up, til now. She now has to go and see a Nephrologist, and her GP was very interested to hear of my diagnosis of IGAN, and has requested access to my medical history relating to IGAN. Of course I have no problem with this. I am of course hoping that my mother does not end up with a diagnosis of IGAN, but am now wondering if she does have it, if there is after all a hereditary connection. I know my GP and Neph will be very interested should it prove she does have it. Her GP said that in her day, the medical expertise just was not available to investigate anyway, but given that her BP is ok, he is sure that she would have had this for years without trouble. I thought this was very interesting. My mum did not think about any connection until she remembered a conversation we had a while back shen she asked about my symptoms, my mother is a devil for not keeping me informed about how she is doing, whereas I tell her everything, and am often faced with that glazed look!!!! Will keep you all posted. Best wishes _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2001 Report Share Posted July 16, 2001 There seem to be both kinds of IgAN people: those with other family members who have had some kind of kidney disease (it may not have been known to be IgAN at the time), and those who don't. I suspect that if, for some reason, they biopsied all the relatives of IgAN patients, they might find a lot of sub-clinical IgA nephropathy, ie. some abnormal IgA deposition in the glomeruli, but not enough to cause problems. Or, maybe not... Pierre Re: Information There are kidney problems on both my parents sides but not them directly. For me, there is a more direct genetic connection. The funny thing is, Grandma simply had one kidney quit. Dad didn't go on dialysis until a couple days before he died, and I got diagnosed with renal insufficiency at 17 (biopsy at 19 proving I had IgA disease). Robin s About Transplantation: organ donation and transplantation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 My spouse has been diagnosed with LBD for about 6 months now. For about 6 years they just called it PD but all the symptoms were cognitive which led to the new diagnoses. Recently she began falling, Feb. 26, March 4, now again, March 25. Now I try not to leave the house unless she is in bed or the recliner chair. Is there anyone who thinks they have a handle on the frequency of these falls and do they normally increase as time goes on? Does a walker help or is that pretty useless when one's body just melts down? Any thoughts will be appreciated. ________________________________________________________________________________\ ____ You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. http://tc.deals.yahoo.com/tc/blockbuster/text5.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2008 Report Share Posted April 2, 2008 Dear Lorraine, and Friends, Your spouses have what sound like my mom's original (PD) and later diagnoses. I let the experts determine if this was/is actually PD with dementia or LBD that involves PD-like symptoms. The more accurate diagnosis is LBD with parkinsonism. Her mobility and use of hands/arms was helped for nearly 4 years with Sinemet. She couldn't take other PD meds such as Mirapex, Requip, etc., as they caused further dementia that resembled a psychotic breakdown. This is not uncommon. She does have OH, too, and the advice to stand, move, sit slowly is good. It's also helpful to remind our loved ones to inhale/exhale, as some - like my mom - hold their breath when transferring and exercising. OH appears with many neuro-involved diseases, not only PD and LBD. Both the central nervous system and autonomic nervous system can be affected. Falls are scary to our LOs and to us. My mom's MD did a fall assessment, to determine the cause. Yes, it can be OH, but there are multiple other causes of falls. So have this checked. Getting an accurate LBD/PD diagnosis is vital, so that medications and other treatments are maximized. As you've read here, the meds that work for LBD - including the PD symptoms - must be carefully evaluated and dosed. What works in other dementias such as Alzheimer's can harm those with LBD. Hoping everyone has a peaceful evening. Lin lbellomy51 wrote: My spouse does not have a diagnosis of LBD but from his symptoms, I think he has it. One of the reasons they might fall is that their blood pressure drops rapidly (orthostatic hypotension) and they fall. Standing slowly and maybe waiting a few seconds may help. My husband has a PD diagnosis and is in a wheelchair over 1/2 of the time. He is 56. I am sure there will be lots more help coming from others. Lorraine > > My spouse has been diagnosed with LBD for about 6 months now. For about 6 years they just called it PD but all the symptoms were cognitive which led to the new diagnoses. Recently she began falling, Feb. 26, March 4, now again, March 25. Now I try not to leave the house unless she is in bed or the recliner chair. Is there anyone who thinks they have a handle on the frequency of these falls and do they normally increase as time goes on? Does a walker help or is that pretty useless when one's body just melts down? Any thoughts will be appreciated. > > > > > ________________________________________________________________________________\ ____ > You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost. > http://tc.deals.yahoo.com/tc/blockbuster/text5.com > > Quote Link to comment Share on other sites More sharing options...
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