Guest guest Posted October 17, 2003 Report Share Posted October 17, 2003 Dear Edith, Sorry to hear you are feeling discouraged. You know your body has been through alot lately with surgery and all the rehab. Try not not to panic or worry. I bet you the anesthesia from surgery may have something to do with the balance. I remember when I had my last surgery(c-section) 4 years ago I had a terrible time with my balance. I did not know that I had pls. Give yourself extra time and care. You are in my prayers. symptoms > I've been away from the computer for a few days while driving to > Indy, visiting grandkids, and driving back to Florida. Exhausting. > > One of the symptoms I see listed is overactive bladder. That was > definitely my situation until I saw a uro-gynecologist. She started > me on Ditropan XL and some behavior modification, and eureka! I can > wait 2-3 hours without a problem, and often longer. I don't even get > up during the night anymore, whereas I used to get up 1-3 times. > FYI, I also tried Detrol XL and that didn't work for me. > > I wish I could say I'm seeing improvement, which my husband and all > my friends want me to say. I tell them what they want to hear, but > I'm getting pretty discouraged. It's been 2 1/2 months since > surgery, and my balance seems to be worse. I got really frightened > yesterday when I went to the pool for exercise. Usually, I can start > walking and jumping in the water as soon as I get in, but yesterday > I couldn't take a step without holding on. I did start my exercises > while holding onto the railing, and after a few minutes I could let > go and walk, but it was scary. > > I'll be starting physical therapy again next week to keep my legs as > strong as possible. Is there anything I can take or do to improve my > balance? > > Don't mean to whine, but I feel as if I can't tell anyone how I feel > without seeming to be giving up or being a failure. Thanks for > listening. > > Edith > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 So let me get this straight, they dxed you without spinal taps and especially with no EMG??? I find that rather amazing but then I only play a doctor on this list ;-). Again did you talk about PLS with him? Many doctors have not even heard of it... dale symptoms > Thank you for your warm welcome, > > I've have never felt such support as I have with the PLS and ALS groups. I > live alone now and I am a little scare of the future but I feel extremely > blessed to have found these groups. > My mother said I sounded like I was in a well several years ago. I thought > it was because I had had dental work done. 7/02 I started having balance > and fatigue problems and server headaches, only when I got extremely tired. > My slurred speech 'fat tongue' started in small doses at a time. Everything > got slow for me 10/02 including when I brushed my teeth. I had no strength > to spit or wash my mouth out. > Feb 03 I started bitting the inside of my mouth and tongue. Late April 03, > my overnight manager came to me and asked if I was on muscle relaxers > because of my speech. I was going to show him so I went to my MD and he did > a CAT, many blood test (because my thyroid does not work, but have been on > medicine for 4 yrs) and told me that they were leaning toward als but wanted > my neuro to see me. Neuro did 2 MRIs, one on my throat and one on my brain > areas. Nothing came up. He did many blood test that had to be sent off to > the Mayo Clinic. My 2nd dx came from LSU Medical Center in Shreveport, LA. > but he just looked over the test I had already taken and he said he agreed > with the dx. I asked him about my legs then (Sept, 2003) he said it would > come. > My brother lives in Houston, TX and his best friend is my resporitory doctor > My breathing test were 99/88%. I think he questions the dx but did not > say anything. I had Tommy talk to my brother and that's when my brother > wanted me to check out doctors in Houston. The Baylor Clinic is very > excited to get me down there. They are tring to work me in this month. My > saliva has gotten bad. > I'm still working at Walmart as an overnight stocker (the heavier depts) 40 > hrs a week and work about 20-25 hrs a week as an apartment manager. > God Bless and Keep the Faith > Lana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Hi Lana, Sorry for all your problems. You mentioned " fat tongue " . I also have that. Don't know when it came about but speech has been bad since last Dec and noticed later the tongue was thick. Use walker for getting around. Have stiffness in legs, startle effect, fasiculations, shortness of breath. Did have headaches in am but they went bye-bye, also the yawning has about ceased. Where do you live? We are in Longview, Tx about 66 miles from Shreveport. There are several in this area. I e-mail a member of this group whose diagnoses was changed from PLS to a mild form of ALS, lives about 5 miles from me. I also went to Baylor in Houston for 2 yrs.Dr. Jankovic was my neuro. He misdiagnosed me with Stiffman Syndrome for 2 yrs (8 trips). My neuro here is probably going to send me back to see Dr. Appel at the MND clinic. Always stayed at the Marriott because it adjoined the Tower with a catwalk and was so handy. Pricey but handy. Glad you are letting the group help you and you in turn are helping us. Some great people here. Keep us informed, Friendship headed your way, Arlene in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Hey Dale, I had no spinal tap but I had a EMG, I think. They did a nerve test and a muscle test on me. The only thing they found was I had carbo in the left wrist and they put a needle in my tongue and found definite muscle problems. Lana -- Re: symptoms So let me get this straight, they dxed you without spinal taps and especially with no EMG??? I find that rather amazing but then I only play a doctor on this list ;-). Again did you talk about PLS with him? Many doctors have not even heard of it... dale symptoms > Thank you for your warm welcome, > > I've have never felt such support as I have with the PLS and ALS groups. I > live alone now and I am a little scare of the future but I feel extremely > blessed to have found these groups. > My mother said I sounded like I was in a well several years ago. I thought > it was because I had had dental work done. 7/02 I started having balance > and fatigue problems and server headaches, only when I got extremely tired. > My slurred speech 'fat tongue' started in small doses at a time. Everything > got slow for me 10/02 including when I brushed my teeth. I had no strength > to spit or wash my mouth out. > Feb 03 I started bitting the inside of my mouth and tongue. Late April 03, > my overnight manager came to me and asked if I was on muscle relaxers > because of my speech. I was going to show him so I went to my MD and he did > a CAT, many blood test (because my thyroid does not work, but have been on > medicine for 4 yrs) and told me that they were leaning toward als but wanted > my neuro to see me. Neuro did 2 MRIs, one on my throat and one on my brain > areas. Nothing came up. He did many blood test that had to be sent off to > the Mayo Clinic. My 2nd dx came from LSU Medical Center in Shreveport, LA. > but he just looked over the test I had already taken and he said he agreed > with the dx. I asked him about my legs then (Sept, 2003) he said it would > come. > My brother lives in Houston, TX and his best friend is my resporitory doctor > My breathing test were 99/88%. I think he questions the dx but did not > say anything. I had Tommy talk to my brother and that's when my brother > wanted me to check out doctors in Houston. The Baylor Clinic is very > excited to get me down there. They are tring to work me in this month. My > saliva has gotten bad. > I'm still working at Walmart as an overnight stocker (the heavier depts) 40 > hrs a week and work about 20-25 hrs a week as an apartment manager. > God Bless and Keep the Faith > Lana > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Hi Arlene in Texas, Dr Appel is who I am going to see. I am in contact with his wife that is his personal assistant. They are trying to get me in asap. My brother lives in Spring, TX. He wants to be there with me. Lana -- Re: symptoms Hi Lana, Sorry for all your problems. You mentioned " fat tongue " . I also have that. Don't know when it came about but speech has been bad since last Dec and noticed later the tongue was thick. Use walker for getting around. Have stiffness in legs, startle effect, fasiculations, shortness of breath. Did have headaches in am but they went bye-bye, also the yawning has about ceased. Where do you live? We are in Longview, Tx about 66 miles from Shreveport. There are several in this area. I e-mail a member of this group whose diagnoses was changed from PLS to a mild form of ALS, lives about 5 miles from me. I also went to Baylor in Houston for 2 yrs.Dr. Jankovic was my neuro. He misdiagnosed me with Stiffman Syndrome for 2 yrs (8 trips). My neuro here is probably going to send me back to see Dr. Appel at the MND clinic. Always stayed at the Marriott because it adjoined the Tower with a catwalk and was so handy. Pricey but handy. Glad you are letting the group help you and you in turn are helping us. Some great people here. Keep us informed, Friendship headed your way, Arlene in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Arlene and Lana, If any of your local doctors know anyone at The University of Texas Southwestern Medical Center of Dallas/Department of Neurology, have them give you a referral or better yet, have them make you an appointment. These doctors here are also professors of neurology and they are also members of the Muscular Dystrophy Association (MDA). Once you are in by referral, the MDA will pay for all your doctor bills. Meds and tests are not paid by MDA but any savings is a help. I can only speak about the Dallas MDA, but it should be the same nationwide. Norton Re: symptoms Hi Lana, Sorry for all your problems. You mentioned " fat tongue " . I also have that. Don't know when it came about but speech has been bad since last Dec and noticed later the tongue was thick. Use walker for getting around. Have stiffness in legs, startle effect, fasiculations, shortness of breath. Did have headaches in am but they went bye-bye, also the yawning has about ceased. Where do you live? We are in Longview, Tx about 66 miles from Shreveport. There are several in this area. I e-mail a member of this group whose diagnoses was changed from PLS to a mild form of ALS, lives about 5 miles from me. I also went to Baylor in Houston for 2 yrs.Dr. Jankovic was my neuro. He misdiagnosed me with Stiffman Syndrome for 2 yrs (8 trips). My neuro here is probably going to send me back to see Dr. Appel at the MND clinic. Always stayed at the Marriott because it adjoined the Tower with a catwalk and was so handy. Pricey but handy. Glad you are letting the group help you and you in turn are helping us. Some great people here. Keep us informed, Friendship headed your way, Arlene in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 So I will repeat why are they saying this is ALS vs. PLS??? dale symptoms > > > > Thank you for your warm welcome, > > > > I've have never felt such support as I have with the PLS and ALS groups. > I > > live alone now and I am a little scare of the future but I feel extremely > > blessed to have found these groups. > > My mother said I sounded like I was in a well several years ago. I > thought > > it was because I had had dental work done. 7/02 I started having balance > > and fatigue problems and server headaches, only when I got extremely > tired. > > My slurred speech 'fat tongue' started in small doses at a time. > Everything > > got slow for me 10/02 including when I brushed my teeth. I had no > strength > > to spit or wash my mouth out. > > Feb 03 I started bitting the inside of my mouth and tongue. Late April > 03, > > my overnight manager came to me and asked if I was on muscle relaxers > > because of my speech. I was going to show him so I went to my MD and he > did > > a CAT, many blood test (because my thyroid does not work, but have been on > > medicine for 4 yrs) and told me that they were leaning toward als but > wanted > > my neuro to see me. Neuro did 2 MRIs, one on my throat and one on my > brain > > areas. Nothing came up. He did many blood test that had to be sent off > to > > the Mayo Clinic. My 2nd dx came from LSU Medical Center in Shreveport, > LA. > > but he just looked over the test I had already taken and he said he agreed > > with the dx. I asked him about my legs then (Sept, 2003) he said it would > > come. > > My brother lives in Houston, TX and his best friend is my resporitory > doctor > > My breathing test were 99/88%. I think he questions the dx but did not > > say anything. I had Tommy talk to my brother and that's when my brother > > wanted me to check out doctors in Houston. The Baylor Clinic is very > > excited to get me down there. They are tring to work me in this month. > My > > saliva has gotten bad. > > I'm still working at Walmart as an overnight stocker (the heavier depts) > 40 > > hrs a week and work about 20-25 hrs a week as an apartment manager. > > God Bless and Keep the Faith > > Lana > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 Thanks Norton, I will look into Dallas. On Nov, 2000 I was referred to a Dr. Dewey at the Southwestern School of Medicine, Univ of Texas. He diagnosed me with Parkinson for 4 months and then said " no " it wasn't Parkinson, neuro here then sent me to Houston. They have great drs there. I am just a hard case to diagnose but have progressed so much this yr that my new neuro here is on the right track and she says PLS but also said I might need to see Appel in Houston. He is over the ALS Clinic there. Dallas was a trip! I had a map from Yahoo and we missed a street and ended up on the Ft. Worth freeway. Went a day early so was o.k, Thanks, Arlene in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Hi Dale, They say it is als because of my strong month area muscle spasms and bulbar problems with speech, tongue and throat muscles. I will be going to see Dr. Appel within the next 2 months. My neuro here in Ruston, LA is sending all my records to his assistant this week. So hopefully I will have some things clarified. The only thing my neuro said is missing in his dx of als is the lower neruo problems are negative. Lana -- Re: symptoms So I will repeat why are they saying this is ALS vs. PLS??? dale symptoms > > > > Thank you for your warm welcome, > > > > I've have never felt such support as I have with the PLS and ALS groups. > I > > live alone now and I am a little scare of the future but I feel extremely > > blessed to have found these groups. > > My mother said I sounded like I was in a well several years ago. I > thought > > it was because I had had dental work done. 7/02 I started having balance > > and fatigue problems and server headaches, only when I got extremely > tired. > > My slurred speech 'fat tongue' started in small doses at a time. > Everything > > got slow for me 10/02 including when I brushed my teeth. I had no > strength > > to spit or wash my mouth out. > > Feb 03 I started bitting the inside of my mouth and tongue. Late April > 03, > > my overnight manager came to me and asked if I was on muscle relaxers > > because of my speech. I was going to show him so I went to my MD and he > did > > a CAT, many blood test (because my thyroid does not work, but have been on > > medicine for 4 yrs) and told me that they were leaning toward als but > wanted > > my neuro to see me. Neuro did 2 MRIs, one on my throat and one on my > brain > > areas. Nothing came up. He did many blood test that had to be sent off > to > > the Mayo Clinic. My 2nd dx came from LSU Medical Center in Shreveport, > LA. > > but he just looked over the test I had already taken and he said he agreed > > with the dx. I asked him about my legs then (Sept, 2003) he said it would > > come. > > My brother lives in Houston, TX and his best friend is my resporitory > doctor > > My breathing test were 99/88%. I think he questions the dx but did not > > say anything. I had Tommy talk to my brother and that's when my brother > > wanted me to check out doctors in Houston. The Baylor Clinic is very > > excited to get me down there. They are tring to work me in this month. > My > > saliva has gotten bad. > > I'm still working at Walmart as an overnight stocker (the heavier depts) > 40 > > hrs a week and work about 20-25 hrs a week as an apartment manager. > > God Bless and Keep the Faith > > Lana > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2003 Report Share Posted December 2, 2003 Well that points to PLS!!! I mean I go to the ALS support group, I am advancing as fast as many of them, the difference is I will be there in another year or two (I hope!). Has your doctor even heard of PLS??? dale symptoms > > > > > > > Thank you for your warm welcome, > > > > > > I've have never felt such support as I have with the PLS and ALS groups. > > I > > > live alone now and I am a little scare of the future but I feel > extremely > > > blessed to have found these groups. > > > My mother said I sounded like I was in a well several years ago. I > > thought > > > it was because I had had dental work done. 7/02 I started having > balance > > > and fatigue problems and server headaches, only when I got extremely > > tired. > > > My slurred speech 'fat tongue' started in small doses at a time. > > Everything > > > got slow for me 10/02 including when I brushed my teeth. I had no > > strength > > > to spit or wash my mouth out. > > > Feb 03 I started bitting the inside of my mouth and tongue. Late April > > 03, > > > my overnight manager came to me and asked if I was on muscle relaxers > > > because of my speech. I was going to show him so I went to my MD and he > > did > > > a CAT, many blood test (because my thyroid does not work, but have been > on > > > medicine for 4 yrs) and told me that they were leaning toward als but > > wanted > > > my neuro to see me. Neuro did 2 MRIs, one on my throat and one on my > > brain > > > areas. Nothing came up. He did many blood test that had to be sent off > > to > > > the Mayo Clinic. My 2nd dx came from LSU Medical Center in Shreveport, > > LA. > > > but he just looked over the test I had already taken and he said he > agreed > > > with the dx. I asked him about my legs then (Sept, 2003) he said it > would > > > come. > > > My brother lives in Houston, TX and his best friend is my resporitory > > doctor > > > My breathing test were 99/88%. I think he questions the dx but did > not > > > say anything. I had Tommy talk to my brother and that's when my brother > > > wanted me to check out doctors in Houston. The Baylor Clinic is very > > > excited to get me down there. They are tring to work me in this month. > > My > > > saliva has gotten bad. > > > I'm still working at Walmart as an overnight stocker (the heavier depts) > > 40 > > > hrs a week and work about 20-25 hrs a week as an apartment manager. > > > God Bless and Keep the Faith > > > Lana > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi y, I think one of the primary complaints as far as symptoms go is fatigue, followed by flank pain for some people with IgAN. Not everyone gets the flank pain though, but the fatigue seems fairly common. The other symptoms, spilling protein and blood in urine are more often microscopic, except during a flare up when some IgAN patients get visible blood in their urine when it is characterized by a cola color. Elevated blood pressure is common with IgAN as well, but is another example of a symptom you can't see or feel. It is important to be monitored on a regular basis to make sure your BP is in check, and to keep an eye on your lab results. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi y, I think one of the primary complaints as far as symptoms go is fatigue, followed by flank pain for some people with IgAN. Not everyone gets the flank pain though, but the fatigue seems fairly common. The other symptoms, spilling protein and blood in urine are more often microscopic, except during a flare up when some IgAN patients get visible blood in their urine when it is characterized by a cola color. Elevated blood pressure is common with IgAN as well, but is another example of a symptom you can't see or feel. It is important to be monitored on a regular basis to make sure your BP is in check, and to keep an eye on your lab results. Hope this helps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 y, To be honest, I've never had really any symptoms except a high bp, and the occasional flare-up when I got a very bad flu. Seems to me that each person can get quite different symptoms with IgAN, depending on the person and on kidney function. I hope that all goes well for you and your lab tests. Sophia > What are some kinds of symptoms that you are getting with Iga? For > me I have mild fatigue. Does anyone else feel this way too? What > other things should I expect? > Thanks for all the replies, I feel better already. I just turned in > one of those 24 hour urines and did more blood work today, so I will > find out early next week what my results are...nervous but not much > else I can do but wait. Thanks again. > > y Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 y, To be honest, I've never had really any symptoms except a high bp, and the occasional flare-up when I got a very bad flu. Seems to me that each person can get quite different symptoms with IgAN, depending on the person and on kidney function. I hope that all goes well for you and your lab tests. Sophia > What are some kinds of symptoms that you are getting with Iga? For > me I have mild fatigue. Does anyone else feel this way too? What > other things should I expect? > Thanks for all the replies, I feel better already. I just turned in > one of those 24 hour urines and did more blood work today, so I will > find out early next week what my results are...nervous but not much > else I can do but wait. Thanks again. > > y Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Except for having a little bit of blood and a little bit of protein in my urine when a doctor checked, I had no symptoms whatsoever for the first dozen years or so, until I started having high blood pressure. And even then, I really had no symptoms other than the high blood pressure until very late in chronic renal insufficiency. That's typical with IgAN. Just a slow progression to end-stage renal failure. What I did have, however, once I had to start taking blood pressure meds, is severe problems with the meds, including a few trips to emergency. Then there are those who seem to have some of the symptoms associated with HSP, and that can happen even in early IgAN. Then there are those who have particularly heavy proteinuria even very early on in the disease, and those people might experience some symptoms caused by that (the symptoms of nephrotic syndrome). So, it's all very variable. Pierre Re: symptoms > y, > > To be honest, I've never had really any symptoms except a high bp, > and the occasional flare-up when I got a very bad flu. Seems to me > that each person can get quite different symptoms with IgAN, > depending on the person and on kidney function. > > I hope that all goes well for you and your lab tests. > > Sophia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Dear y, sometimes I have mild fatigue and sometimes I have extreme fatigue. I think it is normal. I read in this book my doctor gave me that fatigue is often the symptom that causes a person to go to the doctor to be checked out in the first place. I am excited, I have next week off. I was gonna go ona " personal " vacation, but now I think I'll stick around. I am so looking forward to SLEEP! I was very glad to see the replies and the support that you received. It helps a lot, doesn't It? _____ From: scootercarlson Sent: Wednesday, March 31, 2004 1:14 PM To: iga-nephropathy Subject: symptoms What are some kinds of symptoms that you are getting with Iga? For me I have mild fatigue. Does anyone else feel this way too? What other things should I expect? Thanks for all the replies, I feel better already. I just turned in one of those 24 hour urines and did more blood work today, so I will find out early next week what my results are...nervous but not much else I can do but wait. Thanks again. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe 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 April 2, 2004 Report Share Posted April 2, 2004 Dear y, sometimes I have mild fatigue and sometimes I have extreme fatigue. I think it is normal. I read in this book my doctor gave me that fatigue is often the symptom that causes a person to go to the doctor to be checked out in the first place. I am excited, I have next week off. I was gonna go ona " personal " vacation, but now I think I'll stick around. I am so looking forward to SLEEP! I was very glad to see the replies and the support that you received. It helps a lot, doesn't It? _____ From: scootercarlson Sent: Wednesday, March 31, 2004 1:14 PM To: iga-nephropathy Subject: symptoms What are some kinds of symptoms that you are getting with Iga? For me I have mild fatigue. Does anyone else feel this way too? What other things should I expect? Thanks for all the replies, I feel better already. I just turned in one of those 24 hour urines and did more blood work today, so I will find out early next week what my results are...nervous but not much else I can do but wait. Thanks again. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe 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 April 2, 2004 Report Share Posted April 2, 2004 Dear y, sometimes I have mild fatigue and sometimes I have extreme fatigue. I think it is normal. I read in this book my doctor gave me that fatigue is often the symptom that causes a person to go to the doctor to be checked out in the first place. I am excited, I have next week off. I was gonna go ona " personal " vacation, but now I think I'll stick around. I am so looking forward to SLEEP! I was very glad to see the replies and the support that you received. It helps a lot, doesn't It? _____ From: scootercarlson Sent: Wednesday, March 31, 2004 1:14 PM To: iga-nephropathy Subject: symptoms What are some kinds of symptoms that you are getting with Iga? For me I have mild fatigue. Does anyone else feel this way too? What other things should I expect? Thanks for all the replies, I feel better already. I just turned in one of those 24 hour urines and did more blood work today, so I will find out early next week what my results are...nervous but not much else I can do but wait. Thanks again. y To edit your settings for the group, go to our Yahoo Group home page: http://groups.yahoo.com/group/iga-nephropathy/ To unsubcribe via email, iga-nephropathy-unsubscribe 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 April 7, 2004 Report Share Posted April 7, 2004 , I haven't noticed a change in the color of my urine, but my doctor says it is microscopic. Which is a bigger threat? My blood pressure remains stable, which my doctor says is a good thing. My creatine (sp?) was 1.7-but my doctor says that with my size it's not so bad and that we don't need a biopsy as of yet. My other question- how do you figure out an estimated functioning without a biopsy? I realize that a biopsy is going to be the best idea of what your functioning is, but are there other ways around it? Thanks, scotty > Hi y, > > I think one of the primary complaints as far as symptoms go is fatigue, > followed by flank pain for some people with IgAN. Not everyone gets the flank pain > though, but the fatigue seems fairly common. The other symptoms, spilling > protein and blood in urine are more often microscopic, except during a flare up > when some IgAN patients get visible blood in their urine when it is > characterized by a cola color. Elevated blood pressure is common with IgAN as well, but > is another example of a symptom you can't see or feel. It is important to be > monitored on a regular basis to make sure your BP is in check, and to keep an > eye on your lab results. > > Hope this helps! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 , I haven't noticed a change in the color of my urine, but my doctor says it is microscopic. Which is a bigger threat? My blood pressure remains stable, which my doctor says is a good thing. My creatine (sp?) was 1.7-but my doctor says that with my size it's not so bad and that we don't need a biopsy as of yet. My other question- how do you figure out an estimated functioning without a biopsy? I realize that a biopsy is going to be the best idea of what your functioning is, but are there other ways around it? Thanks, scotty > Hi y, > > I think one of the primary complaints as far as symptoms go is fatigue, > followed by flank pain for some people with IgAN. Not everyone gets the flank pain > though, but the fatigue seems fairly common. The other symptoms, spilling > protein and blood in urine are more often microscopic, except during a flare up > when some IgAN patients get visible blood in their urine when it is > characterized by a cola color. Elevated blood pressure is common with IgAN as well, but > is another example of a symptom you can't see or feel. It is important to be > monitored on a regular basis to make sure your BP is in check, and to keep an > eye on your lab results. > > Hope this helps! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 A biopsy helps to officially diagnose the disease, and because it shows how much scarring there is, it's part of the picture that helps with the prognosis. But, most of the time, it's a pretty wide range anyway, like maybe 10-20 years or more, and maybe never reach end-stage renal disease. When the disease is as mild as it appears to be in your case, it's not possible to predict any more accurately than that. If you had more ominous signs that might be found in a biopsy, like crescents, you would likely be having more severe symptoms than you are. It doesn't really say anything about kidney function. Just the usual blood work does that. All you need to estimate your kidney function is serum creatinine. With yours being 1.7, and you being a large size, your kidney function is probably close to normal anyway. If it was 50% and you had a lot of proteinuria, your doctor would probably want the biopsy. In a situation like yours, it's often a toss-up. A biopsy carries a small risk of damaging the kidney, so it's not worth doing if it's not going to provide any useful information or make any difference in terms of treatment. On the other hand, you will probably end up having one anyway, sometime down the line. I didn't have a biopsy until 16 years after they first detected blood in my urine. Now they don't wait that long, of course, but many people don't have one until they show some more severe symptoms, like proteinuria that approaches the moderate range. Pierre Re: symptoms > , > I haven't noticed a change in the color of my urine, but my doctor > says it is microscopic. Which is a bigger threat? My blood > pressure remains stable, which my doctor says is a good thing. My > creatine (sp?) was 1.7-but my doctor says that with my size it's not > so bad and that we don't need a biopsy as of yet. My other question- > how do you figure out an estimated functioning without a biopsy? I > realize that a biopsy is going to be the best idea of what your > functioning is, but are there other ways around it? > > Thanks, > scotty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 A biopsy helps to officially diagnose the disease, and because it shows how much scarring there is, it's part of the picture that helps with the prognosis. But, most of the time, it's a pretty wide range anyway, like maybe 10-20 years or more, and maybe never reach end-stage renal disease. When the disease is as mild as it appears to be in your case, it's not possible to predict any more accurately than that. If you had more ominous signs that might be found in a biopsy, like crescents, you would likely be having more severe symptoms than you are. It doesn't really say anything about kidney function. Just the usual blood work does that. All you need to estimate your kidney function is serum creatinine. With yours being 1.7, and you being a large size, your kidney function is probably close to normal anyway. If it was 50% and you had a lot of proteinuria, your doctor would probably want the biopsy. In a situation like yours, it's often a toss-up. A biopsy carries a small risk of damaging the kidney, so it's not worth doing if it's not going to provide any useful information or make any difference in terms of treatment. On the other hand, you will probably end up having one anyway, sometime down the line. I didn't have a biopsy until 16 years after they first detected blood in my urine. Now they don't wait that long, of course, but many people don't have one until they show some more severe symptoms, like proteinuria that approaches the moderate range. Pierre Re: symptoms > , > I haven't noticed a change in the color of my urine, but my doctor > says it is microscopic. Which is a bigger threat? My blood > pressure remains stable, which my doctor says is a good thing. My > creatine (sp?) was 1.7-but my doctor says that with my size it's not > so bad and that we don't need a biopsy as of yet. My other question- > how do you figure out an estimated functioning without a biopsy? I > realize that a biopsy is going to be the best idea of what your > functioning is, but are there other ways around it? > > Thanks, > scotty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 A biopsy helps to officially diagnose the disease, and because it shows how much scarring there is, it's part of the picture that helps with the prognosis. But, most of the time, it's a pretty wide range anyway, like maybe 10-20 years or more, and maybe never reach end-stage renal disease. When the disease is as mild as it appears to be in your case, it's not possible to predict any more accurately than that. If you had more ominous signs that might be found in a biopsy, like crescents, you would likely be having more severe symptoms than you are. It doesn't really say anything about kidney function. Just the usual blood work does that. All you need to estimate your kidney function is serum creatinine. With yours being 1.7, and you being a large size, your kidney function is probably close to normal anyway. If it was 50% and you had a lot of proteinuria, your doctor would probably want the biopsy. In a situation like yours, it's often a toss-up. A biopsy carries a small risk of damaging the kidney, so it's not worth doing if it's not going to provide any useful information or make any difference in terms of treatment. On the other hand, you will probably end up having one anyway, sometime down the line. I didn't have a biopsy until 16 years after they first detected blood in my urine. Now they don't wait that long, of course, but many people don't have one until they show some more severe symptoms, like proteinuria that approaches the moderate range. Pierre Re: symptoms > , > I haven't noticed a change in the color of my urine, but my doctor > says it is microscopic. Which is a bigger threat? My blood > pressure remains stable, which my doctor says is a good thing. My > creatine (sp?) was 1.7-but my doctor says that with my size it's not > so bad and that we don't need a biopsy as of yet. My other question- > how do you figure out an estimated functioning without a biopsy? I > realize that a biopsy is going to be the best idea of what your > functioning is, but are there other ways around it? > > Thanks, > scotty > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi y, Pierre already answered this, but I just wanted to add one thing, that the common tests used to calculate renal function are serum creatinine and creatinine clearance from a 24 hour urine collection. Your doctor will probably monitor the creatinine on a regular basis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2004 Report Share Posted April 7, 2004 Hi y, Pierre already answered this, but I just wanted to add one thing, that the common tests used to calculate renal function are serum creatinine and creatinine clearance from a 24 hour urine collection. Your doctor will probably monitor the creatinine on a regular basis. Quote Link to comment Share on other sites More sharing options...
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