Guest guest Posted January 27, 2001 Report Share Posted January 27, 2001 hi , I have always heard, that ridges on your fingernails--meant you had a Thyroid Problem. That in is one of the symptems listed in many Drs. manuels. Just a thought,- you might want to invistigate!! By, the way, , I don't charge any thing for my advise!!!!!!!! .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2001 Report Share Posted January 30, 2001 ... I can't believe she's that young and had a stroke... I guess there isn't any set rules of who can get them and who can't.... I'm just supprised. Please, when you find out more could you pass it along to us. I'm interested because on my fathers side of the family.... everyone died of a stroke. They do so much more now that can help then they did back then. What happens if the doctors you have a choice of don't know anything about myositis? Can you then call your insurance company and ask to see a Rheumy that is knowlegeable about the disease.... ??? Hey, whining is good for the soul... Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2001 Report Share Posted February 5, 2001 hi JULIE, And all of our E-groups Yes, --I had the most wonderful weekend--All I expected. We had a good time remembering, old neighbors--and all the former good and bad traits of people we useed to kmow. I had food ordered, my aide went to " Rib-Tickler and picked it up, and my daughter, ordered breakfast Kalachies, and as for the food deptpartment had it made. I bought the video of " Pretty Woman " and we watched it. Steve, had never watched it, but I have seen about 5 or 6 times==I enjoy it every time I watch it--Steve really liked it, enven though, He hardly watches home video's. Last night, we went to Friendswood--60 miles from here-to take my grandson back to his Dad's house, with my daughter, being our giud and driver. On the way back, she took a different route, so Steve could get a look around Houston, where he lived years ago. My daughter, Marilyn, lives with-in walking didstance--for normal walkinf of my apartment. She is a school educational diagnostnostion. She and Steve got along, real well, since he taught shool for 23 years, and also was a principal. They had a lot in common. So all in and all, my weekend turned out to be awonderful way to spend a weekend. Even improved my aches and pains. so any of you out there, that needs a boost to there IBM, I highly recommend this, kind of a cyber-Romance!!!!! Love, Ev. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Hi ....I'm sorry about the MRI findings. But, I also think it's part of myositis. Although the doctors aren't sure. My neck and back problems are due to my Osteoarthritis. When I turn my head side to side I can hear it making all these popping noises...also hurts. I do have times when I'm not able to move my head in either direction. When I'm out shopping I have to keep going....if I stand still for even a few minutes my back starts to really hurt. Of course my weight is not helping. It throws my balance off. Ev.... You've been very blessed to find a good friend. I'm so happy you both had a really nice time...good for you. Keep us posted and I do hope you have many more dates. Mike .... I forgot that DM forms holes in the muscles... PM forms tears. Deneen... hope your doing better. I worry about your weight. Can the doctor explain why your loosing more weight? Remember, if you get really sick it won't help you with your case. Take time off for your self while your going through this mess. Hope today was better for you. .... I hope your doing better today. Any thing new on the horizon? Sandy.... how are things going for you? Sherry.... how are you doing? Any better? To everyone else.. hope you all had a great day and check in when you can. I sometimes get to the point where I feel I don't have anything to say....my life is dull. But, try to drum up something...especially those that haven't checked in for some time. We would love hearing from you. Take care everyone. Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Hello All, It's me, Sherry, I haven't written for a while, I, like you said, Vicky, don't really have much to say. I am stuck in a rut. Nothing changes; I know very little more about LGMD than I did when I was diagnosed. I see the specialist on the 27th; I am looking forward to talking to someone who knows something about this disease. I have been enjoying being at home though. The house looks better, and we have actually sat down and ate at the dining table as a family a few times. I can't remember the last time we did that. It was awkward the first time, it was like noone knew what we were suppose to do at the table. It feels good to rest when I feel like I need to. Cari, how's 's rash, I haven't heard from you for awhile. I don't want to start naming names, I am afraid I will leave someone out, so I hope everyone is hanging on. You are all so dear to me, you feel like a family- I guess in a way we are, huh? God Bless! >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Tue, 6 Feb 2001 19:33:20 -0800 (PST) > > > >Hi ....I'm sorry about the MRI findings. But, I also think it's >part of myositis. Although the doctors aren't sure. My neck and back >problems are due to my Osteoarthritis. When I turn my head side to side >I can hear it making all these popping noises...also hurts. I do have >times when I'm not able to move my head in either direction. When I'm >out shopping I have to keep going....if I stand still for even a few >minutes my back starts to really hurt. Of course my weight is not >helping. It throws my balance off. > >Ev.... You've been very blessed to find a good friend. I'm so happy you >both had a really nice time...good for you. Keep us posted and I do >hope you have many more dates. > >Mike .... I forgot that DM forms holes in the muscles... PM forms tears. > >Deneen... hope your doing better. I worry about your weight. Can the >doctor explain why your loosing more weight? Remember, if you get >really sick it won't help you with your case. Take time off for your >self while your going through this mess. Hope today was better for you. > >.... I hope your doing better today. Any thing new on the >horizon? > >Sandy.... how are things going for you? > >Sherry.... how are you doing? Any better? > >To everyone else.. hope you all had a great day and check in when you >can. I sometimes get to the point where I feel I don't have anything to >say....my life is dull. But, try to drum up something...especially >those that haven't checked in for some time. We would love hearing from >you. > >Take care everyone. >Vicki > Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2001 Report Share Posted February 6, 2001 Ev, I'm so happy that things went so well for you this past weekend. You deserved something great! Let good feelings carry you all through the next week. Thinking of you. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 , Absolutely you should say that to the nurse if that is what you are feeling! Maybe she will relay this to the Dr. They must learn to be more respectful. Hugs, Cari >From: gide672@... >Reply-To: OurMyositis >To: OurMyositis >Subject: (unknown) >Date: Wed, 07 Feb 2001 02:41:41 -0000 > >Hi Guys, >Yes Mike, WE GOT THE SNOW- next time i'll do my best to send it up >your way. Next question, which you may not know--- just what body >part or parts do they intend to image? leg muscles, arms, more? An >MRI can also show areas of muscle inflammation that i believe may >turn up white on the scan. Helpful when myositis is spotty, which I >gather it can often be. I was hoping something might show up in my >neck area, but I truly do not know if anything else did- i was simply >told today that my neck MRI does indeed show degenerative c-spine >changes and most likely another herniated disc--- duh, I think I knew >that already. I get this info from my internist simply writing a note >in my file which the nurse reads to me when she calls with results. I >had a couple of questions for her, but she said she could have the >doctor call me. I said, " no thanks- I don't think he ever wants to >see me again. " Now- maybe I should NOT have said that, but I FELT >like it!!!! So- will sit on my butt until I see the neurosurgeon Feb >28. Today I did nt feel too badly- even went to choir practice which >I enjoyed. My CPK was 50 and sed rate 0. I rather expected that to be >the case- but I KNOW there have been other " things " going on with the >old body--- and I just pray we can get it figured out so I dont >eventually become a cripple! I read on the other myo board of a gal >who has gotten 4 herniated discs ( in same areas as me apparently) >due to the myositis- or at least a sort of indirect cause of it. >Fern, yes, I think you have enough to deal with. It'll be interesting >to see what kind of reaction I get from the 2 specialts I'll be >seeing. I only hope they truly listen to me and respect me. Love to >all- > > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Hi Sherry, We keep missing each other on Yahoo Messenger. I know sometimes it looks like I'm on but usually it is one of my kids sitting there or my husband. By the time I see your name flashing you are gone. Sorry. Keep trying me. 's rash is fine. The Dr. said we will probably never know what caused it. It looked so bad for a few days. He is back at preschool. The kids had all drawn pictures for him. The whole class called him on his birthday and sang to him. He loved it! They all hugged him when he walked in the room yesterday morning. Hugs to all, Cari > >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Wed, 07 Feb 2001 00:32:20 -0500 > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Hello All, It's me, Sherry, I haven't written for a while, I, like you said, Vicky, don't really have much to say. I am stuck in a rut. Nothing changes; I know very little more about LGMD than I did when I was diagnosed. I see the specialist on the 27th; I am looking forward to talking to someone who knows something about this disease. I have been enjoying being at home though. The house looks better, and we have actually sat down and ate at the dining table as a family a few times. I can't remember the last time we did that. It was awkward the first time, it was like noone knew what we were suppose to do at the table. It feels good to rest when I feel like I need to. Cari, how's 's rash, I haven't heard from you for awhile. I don't want to start naming names, I am afraid I will leave someone out, so I hope everyone is hanging on. You are all so dear to me, you feel like a family- I guess in a way we are, huh? God Bless! >From: anzavic@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Tue, 6 Feb 2001 19:33:20 -0800 (PST) > > > >Hi ....I'm sorry about the MRI findings. But, I also think it's >part of myositis. Although the doctors aren't sure. My neck and back >problems are due to my Osteoarthritis. When I turn my head side to side >I can hear it making all these popping noises...also hurts. I do have >times when I'm not able to move my head in either direction. When I'm >out shopping I have to keep going....if I stand still for even a few >minutes my back starts to really hurt. Of course my weight is not >helping. It throws my balance off. > >Ev.... You've been very blessed to find a good friend. I'm so happy you >both had a really nice time...good for you. Keep us posted and I do >hope you have many more dates. > >Mike .... I forgot that DM forms holes in the muscles... PM forms tears. > >Deneen... hope your doing better. I worry about your weight. Can the >doctor explain why your loosing more weight? Remember, if you get >really sick it won't help you with your case. Take time off for your >self while your going through this mess. Hope today was better for you. > >.... I hope your doing better today. Any thing new on the >horizon? > >Sandy.... how are things going for you? > >Sherry.... how are you doing? Any better? > >To everyone else.. hope you all had a great day and check in when you >can. I sometimes get to the point where I feel I don't have anything to >say....my life is dull. But, try to drum up something...especially >those that haven't checked in for some time. We would love hearing from >you. > >Take care everyone. >Vicki > Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 It sounds like a wonderful weekend Ev. I hopw there are many more to come. He sounds like a wonderful person. Hugs, Cari >From: SueS36695@... >Reply-To: OurMyositis >To: OurMyositis >Subject: Re: (unknown) >Date: Wed, 7 Feb 2001 07:43:11 EST > >Ev, I'm so happy that things went so well for you this past weekend. You >deserved something great! Let good feelings carry you all through the next >week. >Thinking of you. Sue _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2001 Report Share Posted February 7, 2001 Good Morning to Everyone... Hi Sherry... In doing research on LGMD, I think I sent you some stuff, it seems that they are doing or getting ready to start clinical trials for the disease. One article said the trials looked very promising. I hope your doctor explains the trials to you and maybe you can get in on one of them. Seeeee, there is something good coming out of your disease.... " A Clean House " !. I'm so glad though that you don't have to work while your going through this. Take care, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2001 Report Share Posted August 28, 2001 , I will do it straight away. Jill is not available, but I will take of that for you. Just let me know when you are ready to return. Beth (unknown) > Jill, > Can u please take me off the list for about 4 days? I > have a virus in my computer and I don't want anyone > else's to become infected > > Thank u , > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 In a message dated 1/4/2003 1:49:13 PM Eastern Standard Time, SteigGirl2@... writes: > Oh, this is a GREAT idea!! I have got to do it, just get a laugh!! > Another idea is to buy him his own bottle and fill it when you fill yours. Make it a cool one - maybe with is favorite sports team or whatever. Be sure you keep his filled. After a while, he'll be as posessive as you are <g>. -Crys- (Lifetimer since August 1995) WW to date: 178.6/ 140.2 / 140Â Â (-38.4) Weight in 2003: 139.6 / 140.2 / 130 (+0.6) Well, the day has just begun and I'm already running late. With too many Irons in the fire and too much on my plate. I'd be pulling out my hair if I could just get one had free, And I'd stop the world if I could find the key! What I see is telling me the worlds gone crazy. But what is real says God's still on his throne. What I need is to remember one thing: That the Lord of the gentle breeze is Lord of the rough and tumble. And He is the King of the jungle! - Curtis Chapman- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2003 Report Share Posted January 4, 2003 " HOW MUCH DID YOU JUST DRINK? DAMN, NOW I HAVE TO START OVER, GET YOUR OWN DERN GLASS YOU MOOCHER " !! everyday I say these words, but he says " your water just tastes better " , but he's just too " busy " to go get his own. One day, Im gonna lace it with something to set his lips on fire, or maybe salt it down really good, that ought to teach the big mooch!! Oh, this is a GREAT idea!! I have got to do it, just get a laugh!! Hahahahahahahaha Semalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 22, 2003 Report Share Posted January 22, 2003 Charlotte, There is a lot of research going on out there.......I know that there are lots of studies going on at the teaching hospital I'm at. Its not all to do with IgA but kidney disease generally and autoimmune diseases too and this will eventually help to solve our problems I hope. who is also a member of this group, with a lot on his plate at the moment, is under a Neph who thinks he knows the causes of IgA, and there is another Doc in the UK who is working on a blood test to help diagnosis.......that's just two and I'm pretty sure Pierre knows about a lot more.......so there is a lot of positive things going on. Our job as patients with IgA is to stay as positive as we can, keep ourselves informed and politely 'educate' those members of the medical profession who don't know much about IgA, the best we can.......easier said than done sometimes! But that way, we will be helping others who are coming on behind us and that's a pretty good contribution to life, I think. Sally. PS Here's the info from Dr Bruce n below and before it, is the comment made which is quite exciting and I hope you don't mind me giving you a high profile here! SNIP.......I also met with a transplant doctor there whose specialty is IGA, he > called it his passion. His name is Dr. Bruce n and he does lots > of genetic studies on IGA. He talked a lot about inheritance of the > genes and where exactly they come from. It was great talking to a > nephrologist who actually seems to know something in great detail > about this disease. He told me that they had identified which genes > were the cause of IGA as well as what exactly happens (Something to > do with extra sugar molecules) Next time I meet with him i'll try to > get more information. He has great hopes that there will be a > genetic " fix " to this someday...........SNIP IgA NEPHROPATHY: AN AUTOIMMUNE CHARACTER OF THE DISEASE J. Mestecky, J. Novak, B.A. n, M.Tomana Departments of Microbiology and Medicine, University of Alabama at Birmingham, USA IgA1 nephropathy (IgAN), the most common glomerulonephritis in the world, is characterized by the deposition of IgA1, C3 and IgG, and/or IgM in the glomerular mesangium, elevated serum levels of IgA1, and of circulating immune complexes (CIC) containing IgA1, IgG, and C3. Recent studies indicate that IgA1 molecules in CIC and in mesangial deposits display aberrant glycosylation patterns of O-linked glycan chains in the IgA1 hinge region: there is a deficiency of galactose (Gal) linked by beta 1,3 glycosidic bond to N-acetylgalactosamine (GalNAc) that is usually sialylated. Direct carbohydrate analyses, and reactivities with lectins and sets of monoclonal and polyclonal antibodies indicate that terminal GalNAc residue(s) generate an antigenic determinant apparently shared with microorganisms that colonize and infect mucosae. Consequently, sera of healthy individuals and IgAN patients contain high titers of antibodies to GalNAc in the IgA1 hinge region. In IgAN patients, these antibodies form CIC with Gal-deficient IgA1 with subsequent mesangial deposition. Thus, IgAN should be considered as an autoimmune disease with Gal-deficient hinge region of IgA1 as an antigen. Undergalactosylation of the IgA1 hinge region may involve deficiency of beta 1,3 galactosyltransferase and/or increased intracellular activity of alpha 2,6 sialytransferase resulting in premature sialylation and deficient galactosylation of GalNAc. Intracellular activities of these glycosyltransferases are influenced by various cytokines and viral infections that frequently induce episodes of macroscopic hematuria. (unknown) Dear Everyone, You all talk about different levels and path reports and one of the girls asked me for my path stuff .I have never known these things .Every thing i am told is very much in laymen terms.All i know is what the neph tells me and that it seems is not much.I have a history of progession of the iga from the age of ten iam now 39 and the condition is in an agressive form and the doc has put me on fish oil . I have started with acupunture myself to try and increase my energy levels .I have read alot on iga and still i am perplexed at what will happen and reading what you all say helps me to understand that this iga is a unique thing and attacks us in varying ways .It is a cruel condition who out there has the answer to end all the suffering .Is there an answer to this question .Lets hope we find it soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2003 Report Share Posted March 15, 2003 When The Doc. first started talking transplant with me, he introduced me to a woman who had been on dialysis since she was in her teens. She had a transplant and the nephrologists helped her through her pregnacy. So I think, go ahead, just talk to the nephrologist. I plan on going back to work ftermine and I am a teacher. (unknown) Hi, I'm new here. My husband was diagnosed IGA nephropathy in 1995. He has a high blood pressure, blood and protein in his urine. He feels very good, no any pain. About a month ago, the doctor told us that his creatinin level very high, his kidney function about 35%. And we have to think about a transplantation. We don't know anybody who had a transplantation. I'm very afraid. He is the most important in my life. How long can somebody live after the transplant? He is only 32. And we don't even have a child. I heard, after the transplantation he easily can die just in a simply flu. Is it true? Can we plan a child? Children usually got chickenpox, etc. Is it really dangerous for my husband? Thank you for any comment. Sorry, if my English not the best. Timi Vancouver, Canada Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2003 Report Share Posted March 15, 2003 Hi Timi. Welcome to the group. The first thing I think you should do is ask your husband's nephrologist if you can be referred for treatment options education (sometimes called pre-dialysis classes, but this is a misnomer, as they educate about all the options including transplant). Usually this is done when patients are about a year away from needing dialysis (approx. 30% kidney function). To answer your specific questions: How long can somebody live after the transplant? Indefinitely. The transplanted kidney might not last as long as your husband's lifetime, but if that happens, he goes on dialysis and hopefully, he can still get another transplant. A related live donor transplant might easily last 25 years or more (but of course, nobody can predict that for sure). I know people who had a non-related cadaver transplant more than 15-20 years ago and are still going strong with no signs of rejection. After the transplantation he easily can die just in a simply flu. Is it true? It's true that people with transplants can more easily catch flus, etc., because their immune systems are depressed a bit. Do they die? Well, anything is possible, but no, they don't usually. They have to be more careful, and they have to stay aware of the need to contact the transplant centre when there's any sign of illness. They are also followed regularly, and they are given a list of things to do to stay healthy. For example, temperature is checked twice daily, and anytime the temperature is above 37.8 C, they are supposed to call the transplant nurse right away. Same with other signs they have to watch for. Yes, a man can father a child after a kidney transplant, and on dialysis too. It happens all the time. In fact, a man or woman is likely to be more fertile after the transplant than before. Yes, it may be more problematic to have children around who bring infectious diseases home, but there are thousands of people like that, and they manage. It won't be as easy as if he didn't have kidney failure and a transplant, but it's manageable. Of course, this is something you should discuss with his doctor when the time comes. Hopefully, your husband still has a long time to go before he needs it. Pierre Ottawa, Canada (unknown) > Hi, > > I'm new here. My husband was diagnosed IGA nephropathy in 1995. He > has a high blood pressure, blood and protein in his urine. He feels > very good, no any pain. About a month ago, the doctor told us that > his creatinin level very high, his kidney function about 35%. And we > have to think about a transplantation. We don't know anybody who had > a transplantation. I'm very afraid. He is the most important in my > life. How long can somebody live after the transplant? He is only 32. > And we don't even have a child. I heard, after the transplantation he > easily can die just in a simply flu. Is it true? Can we plan a child? > Children usually got chickenpox, etc. Is it really dangerous for my > husband? > > Thank you for any comment. > Sorry, if my English not the best. > > Timi > Vancouver, Canada > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 I wish you'd give this group another chance. Most of us read everything, but if we find we have no insight we don't post. I do believe the moderators do a great job of replying, though, and maybe your post was overlooked. Please try again-I think this group can help. In a message dated 3/20/03 2:40:19 PM Central Standard Time, rahdjm@... writes: << > When I was diagnosed I looked all over for a support group. I felt so > alone. When I found this group I thought I finally found some help, > but I guess not. I have never felt welcomed here at all. Twice now I > have asked questions and no one answers me. Once CC from Idaho seen > what I had asked and she asked it again and was answered right away. > I wish you all luck with this disease. I will go find some support > elsewhere. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 It would also help, I think, if the member's settings were on something other than " no email " ! Pierre Re: (unknown) > I totally agree with your statement. If a question was > overlooked it was just that...overlooked. I am sure > there was a reason your question wasn't answered. If > it were me I would post it again. We know each other > in this group by name only. There couldn't be any > malacious intent involved in a question gone > umanswered. I pass a lot of questions by that I would > like to comment on because there are other qualified > people here other than myself that are extremely > knowledgable. > > Do ask the question you asked before again & I am sure > you will get a reply...instead of just assuming you > are being ignored. If I can answer it I will do my > best. This is really a great group! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Dear Walkin Woman I am sorry that you feel this way, but did you not express this sentiment only a few weeks ago, and indeed didn't I reassure you in the chatroom. You will see that we have many messages, and do try to read as many as possible. But...we as moderators are battling this disease too, and a case in point, I have recently been hospitalized, had a nasty run of viruses, and now have had a death in the family, which has kept me away from the board for longer than I would like. If you would like to ask your question again, I will personally make sure I answer it, or if not ask someone else to comment. You are not alone as I thought I had explained, but in reality, we simply cannot offer a one to one service as much as we would like to. If you do decide to go elsewhere, good luck to you, and I hope your condition remains stable at least, but in my opinion this is the best group by far on the net. Best wishes UK Moderator Re: (unknown) I wish you'd give this group another chance. Most of us read everything, but if we find we have no insight we don't post. I do believe the moderators do a great job of replying, though, and maybe your post was overlooked. Please try again-I think this group can help. In a message dated 3/20/03 2:40:19 PM Central Standard Time, rahdjm@... writes: << > When I was diagnosed I looked all over for a support group. I felt so > alone. When I found this group I thought I finally found some help, > but I guess not. I have never felt welcomed here at all. Twice now I > have asked questions and no one answers me. Once CC from Idaho seen > what I had asked and she asked it again and was answered right away. > I wish you all luck with this disease. I will go find some support > elsewhere. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2003 Report Share Posted March 20, 2003 Dear Walkin, I too would like to keep you in the group. I have recieved much in the way of help from this group and know that if you stay, you will too. I don't know that every time I post someting that I recieve a reply, but I do for the most part. I don't always replay to all of the postings, but just the ones that I feel that I have something add or feel that the comment would be cogent. Sometimes I just like to be an observer, because of time restraints or where I am when I read the email. i sometimes read them on line from school during my lunch, when students are staying in for misbeharior. I cannot seem to reply on line. It doesn't go through. If I have read from school, I may not reply when I get home. Hopw that some of our encouragement and replies willget you to stay with us. (unknown) When I was diagnosed I looked all over for a support group. I felt so alone. When I found this group I thought I finally found some help, but I guess not. I have never felt welcomed here at all. Twice now I have asked questions and no one answers me. Once CC from Idaho seen what I had asked and she asked it again and was answered right away. I wish you all luck with this disease. I will go find some support elsewhere. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 I've never had an MRI, Lori. I'm guessing it could show some abnormalities, if you have some that could be detected by a kidney ultrasound (and this can appear fairly early on in kidney disease). It's possible your kidneys might have shrunk a bit, and the cortexes will not be normal. But, let us know how it went after you've had it. It will be interesting to learn what they see, kidneywise. Pierre (unknown) > Hello, I am going to have an MRI tomorrow to see what is causing my > back pain. Has anyone out there had an MRI, and if so will my > kidneys look at all different on the MRI just for the mere reason > that I have IgA Nephropathy? I just want to be forwarned if that is > a possibility, because some of the doctors are not extremely familiar > with IgAN. Lori > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > 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 March 21, 2003 Report Share Posted March 21, 2003 No problem. We all had to learn at some time. Pierre (unknown) > Sorry I did not put a subject line on the e-mail I just posted. I'm > kinda new at this e-mail thing. I pretty much don't know what I am > doing so please bear with me. Lori > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 Yes Lori I have had two MRI's on my spine, which shows abnormal degenerative wear on my mid thorassic spine. The pictures I have mind you are of what can only be described as looking like slices of bread, it does not take large shots, it is done as a slicing process, thus ensuring every part of the spine is in view of the consultant. They tend not to take much notice of other parts of your body, concentrating on what they have been asked to look at, unless something is glaringly abnormal no comment is usually made, well here in the UK. I have only ever had concentrated ultrasound and xray on my kidneys and two renograms which did show up an increase in size of my right kidney, I think the MRI would pick up more intricate details if this is what they were scanning. Good luck ok, and I too will be interested to know what they have to say about your back, and your kidneys if they mention them. Best wishes UK Moderator Re: (unknown) I've never had an MRI, Lori. I'm guessing it could show some abnormalities, if you have some that could be detected by a kidney ultrasound (and this can appear fairly early on in kidney disease). It's possible your kidneys might have shrunk a bit, and the cortexes will not be normal. But, let us know how it went after you've had it. It will be interesting to learn what they see, kidneywise. Pierre (unknown) > Hello, I am going to have an MRI tomorrow to see what is causing my > back pain. Has anyone out there had an MRI, and if so will my > kidneys look at all different on the MRI just for the mere reason > that I have IgA Nephropathy? I just want to be forwarned if that is > a possibility, because some of the doctors are not extremely familiar > with IgAN. Lori > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > 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 March 21, 2003 Report Share Posted March 21, 2003 Lori don't worry about that, you should have seen the goofs I made when I first started using forums, highly embarrassing sometimes, so yours is a minor problems, we understand we have all been there. Best wishes (unknown) Sorry I did not put a subject line on the e-mail I just posted. I'm kinda new at this e-mail thing. I pretty much don't know what I am doing so please bear with me. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2003 Report Share Posted March 21, 2003 No, the kidneys typically don't look any different in patients with IgAN. I've been through all the MRI stuff as well, but there were no abnormalities that showed up on it. --- ldanuloff wrote: > Hello, I am going to have an MRI tomorrow to see > what is causing my > back pain. Has anyone out there had an MRI, and if > so will my > kidneys look at all different on the MRI just for > the mere reason > that I have IgA Nephropathy? I just want to be > forwarned if that is > a possibility, because some of the doctors are not > extremely familiar > with IgAN. Lori > > http://mobile.yahoo.com.au - Yahoo! Mobile - Check & compose your email via SMS on your Telstra or Vodafone mobile. Quote Link to comment Share on other sites More sharing options...
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