Guest guest Report post Posted November 23, 2001 Welcome Leah. Hope your find our group useful. Hi I'm new to this message group. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 24, 2001 Hello.....I'm new to thi group. I am a 29 year old male with IgA Nephropathy for the last 10 years. Until recently, when a patient of mine (i'm a dentist) told of of his IgAN, I thought I was alone. However, after finding this group and reading some e-mails, it looks fairly common. THANK YOU. I'm not so scared of the disease and possible ESRF....if it happens, it happens....what can you do? You have to live life the fullest. I do have some questions, that my nephrologist does not like to answer (I know that no one else is a professional.....i just would like some input, PLEASE) 1) Is proteinurea seen as foam in the urine??? 2) My blood pressure is well controlled (120/80) and am taking 30mg of Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term prognosis? 3)where is the address for the IGAN chat line? hope to hear from someone soon. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 25, 2001 Dear Welcome to our group, I hope you find it useful. Reading through your mails, I will try to address your questions as well as I can, but before that, I can assure you are definitely not alone with your IGAN, this group is testament to that. Being scared of any illness is totally normal, and this one being the relatively silent nature is very baffling. I was diagnosed just over 2 years ago, but our Moderator Pierre is the voice of experience with this disease, having had it for some 25 years, so I am sure he will add his comments too. 1. As far as I am aware, proteinura is not seen by foamy urine, but only by proper testing. Most of us in here have or have had proteinura, and I do have foamy urine, but I don't believe this is how they find this out. I have only had protein show 3 x in my diagnosis, and only ever when I have had a virus. I do have gross hematuria, and sometimes it seems you have one or the other. 2. As far as your BP is concerned, that seems ok, although I would have said slightly elevated, mine has been very high in the past, but again only when I have had a virus, if anything it normally tends to run on the low side 90/65. Your cholesterol level is high, and I am assuming this is being addressed. You are probably aware that BP and Cholesterol need to be carefully monitored in the management of this condition. As to your medications I do not take any at present, so I will leave that to those who take them to comment, if comment is needed. 2. The chat room is in the list of activities on the home page of this group i.e. messages, chat etc. It is very easy to use, and Pierre and I have tried it, us being the only two so far. If you want to meet up so to speak let me know and I will come and chat with you. 4. Some of us me included, seem to suffer more than others with colds/flu. I always get the flu shot, as well as pneumonia and meningitis shots each year, at my Neph's insistence. But any colds or other viruses hit me hard, and I can only assume this is due to a weakened system. In your profession you really are more susceptible aren't you. Nasty people with mouths wide open with all manner of nasties LOL!!!!! BTW. 5, As to your prognosis, if I have read your message thoroughly you seem have a slow progression of this condition, as have I. Some of us will never progress to ESRF, but that is really impossible to guage. I am sure your Neph would have a better idea than any of us. Hope this helps a bit. If anyone thinks I have written something incorrectly please do not hesitate to put me right. Best wishes Re: Hello.....I'm new to thi group. I am a 29 year old male with IgA Nephropathy for the last 10 years. Until recently, when a patient of mine (i'm a dentist) told of of his IgAN, I thought I was alone. However, after finding this group and reading some e-mails, it looks fairly common. THANK YOU. I'm not so scared of the disease and possible ESRF....if it happens, it happens....what can you do? You have to live life the fullest. I do have some questions, that my nephrologist does not like to answer (I know that no one else is a professional.....i just would like some input, PLEASE) 1) Is proteinurea seen as foam in the urine??? 2) My blood pressure is well controlled (120/80) and am taking 30mg of Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term prognosis? 3)where is the address for the IGAN chat line? hope to hear from someone soon. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 25, 2001 Welcome to the group . I'll attempt to answer your questions below: 1) Is proteinurea seen as foam in the urine? Yes, but it doesn't really tell you very much about the amount of proteinuria. 2) My blood pressure is well controlled (120/80) and am taking 30mg of Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term prognosis? It certainly is a good sign that your BP is well-controlled on only one BP med. From the numbers, if I understand them correctly, you seem to have the flavour of IgAN that is more heavily proteinuric, even though your serum creatinine appears to be very good (I assume the 115 is serum creatinine). The proteinuria may come down over time, with the ACE inhibitor, or it may go down entirely on its own. If it goes higher, your nephrologist will think about using prednisone to bring it down. I'm sure your nephrologist will be keeping tabs on that. The key thing is that it's not in what they called " nephrotic range " (over 3.5 g/day), so, in that sense, it's not too bad. As for prognosis, even the best nephrologist in the world can't make firm predictions about this, but, I would say that, unless your biopsy suggested rapidly-progressive IgAN, your prognosis should be encouraging - many years before end-stage, if ever. At some point, your doctor might want to put you on a statin for the cholesterol. 3)where is the address for the IGAN chat line? If you mean the chat room that is part of this group, go to the home page: http://groups.yahoo.com/group/iga-nephropathy ....and on the left side, click on Chat. I must warn you that it isn't used all that much though, but it's there for anyone to use, at anytime. Most people just post messages as you just did. Good luck. Pierre List owner Re: > > > Hello.....I'm new to thi group. I am a 29 year old male with IgA > Nephropathy for the last 10 years. Until recently, when a patient of mine > (i'm a dentist) told of of his IgAN, I thought I was alone. However, after > finding this group and reading some e-mails, it looks fairly common. THANK > YOU. I'm not so scared of the disease and possible ESRF....if it happens, > it happens....what can you do? You have to live life the fullest. I do > have some questions, that my nephrologist does not like to answer (I know > that no one else is a professional.....i just would like some input, PLEASE) > > > 1) Is proteinurea seen as foam in the urine??? > 2) My blood pressure is well controlled (120/80) and am taking 30mg of > Monopril (ACE Inhibitor) as well as 3 g of salmon daily. However, my > protein loss is 2.20g / day and my creatine is 115 micrmol/L My cholesterol > level is high at 4.96 (LDL is 3.38). Can anyone guide me to my long term > prognosis? > 3)where is the address for the IGAN chat line? > > hope to hear from someone soon. > > > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 27, 2001 Thank you Pierre and for the response. I was always wondering these questions. It means a great deal for you to answer them. Thanks again. Judy,the Rn, has raised some supicions though. I think she is right that it is more a neurology, nerve, problem. As long as it does not get worse, I think I'll leave the parasthesia in my finger....if it gets worse, I will see a hand specialist. Thanks again. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 9, 2008 Dear - This is a wonderful work of love! All of us need guidance. Those of us whose loved ones are not well-served by their current doctors will benefit beyond imagination. I'm singing your praises! Hugs, Lin --- wrote: > This is a database of doctor's I'm working on w/ a > couple of other > volunteers. Via the Internet we've been seeking > Lewy-savvy doctors - > the list is almost at 800 worldwide... It's a work > in progress. We're > at the 'confirming' stage - reaching out to those > doctors and/or > facilities to see if our information is correct (so > far the response > has been nothing but positive - they're excited > about this list too!) > > I'm only comfortable about recommending those > doctors I think are > definite lewy-savvy at this moment - which are the > doctors that I've > found via articles re: LBD. > > Here's what I have in Kansas: > > Lewy-savvy: > The KU School of Medicine > Doug S. Neef, MD > Family Medicine > Residency Program at Via Christi Regional Medical > Center, 707 N > Emporia Street > Wichita, KS 67214 > > http://www.vcfp.net/ > Article: http://www.aafp.org/afp/20060401/1223.pdf > > That's it... > There's a memory clinic in Kansas City - but don't > have confirmed > doctors yet... but since it's a University I'd guess > there's one > member on their team is Lewy-savvy. You should call > and request the > name of a doctor who can treat Lewy Body Dementia... > > The University of Kansas Medical Center > Burns, MD (not confirmed as Lewy-savvy yet) > KU Alzheimer and Memory Program, Landon Center on > Aging, 3599 Rainbow > Blvd., MS 2012 > Kansas City, KS 66160 > > Fax: > http://www.kualzheimers.org/ > > > > > > > > What is this " list " of doctors I keep hearing > mentioned? I live in > the > > Kansas City area. > > > > > > > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 28, 2011 Dear Amrin, I am praying for you and grieving with you. I am so very sorry. Sincerely, Marit, mum to son with MDS Quote Share this post Link to post Share on other sites
Guest guest Report post Posted April 29, 2011 Dear Amrin, Deeply grived to learn demise of the child. Almighty bless the soul. God bless the family to bear the loss of unbearable void created. I join IMDSA Family in the prayer. Amarjit Singh Anand. Father of Jasjeet mDs 26. FCR : India. > > > Dear Amrin, > > I am praying for you and grieving with you. I am so very sorry. > > Sincerely, > Marit, mum to son with MDS > > Quote Share this post Link to post Share on other sites