| Author | Subject: undiagnosed |
| Martha | Posted At 12:05:10 05/31/2002 I have been looking for a kidney patient forum for undiagnosed kidney patients. I was referred to a nephrologist 10 or more years ago due to high amounts of protien in my urine. The nephrologist monitered me for 1-2 years. He suspected IgA nephropathy and wanted to do a biopsy to confirm ir diagnose. It scared me half to death and I never went back. I am now with a different HMO, and have again been referred to a nephrologist. I really like him and find him easy to talk to. He is not rushing things, but eventually wants to do a biopsy. So far my blood pressure is pretty good. I moniter it at home twice a day. Doc said that although IgA is a possibility, that there are also other possibilities. I am 38, and have started taking my health more seriously. I realize that hiding from the possibility of kidney disease or anything else is uselessaand it wont make the problem go away. I have many health issues, but have no firm diagnosis, except for RLS. Last year I had a Mortons neuroma removed from my right foot. I have one in my left foot also, but I am waiting as long as possible before having it removed. About 2 months after having the neuroma removed last year, I started experiencing extreme joint pain. My primary care doc did some blood tests, and found a positive rheumatoid factor, protien in my urine, and an elevated SED. My white blood count is high also. She referred me to a rheumatologist. I was tested for lyme, lupus, parvo, etc.. I have been seeing the rheumatologist and nephrologist for almost a year, and have no diagnosis from either. I was given a new primary care doc who thought my symptoms sounded a lot more like lupus. I meet more than 4 of the 11 criteria needed for a lupus diagnosis, but my bloodwork for lupus was negative. I'm very glad for that, but now I feel like I'm back at square 1. My rheumatologist says he does not think I have lupus, but he wouldn't call it rheumatoid arthritis either. I originally started being treated with 60mg of prednisone daily. I have since been tapered down to 2.5mg daily. I also take Plaquenil, sulindac, clonazepam, celexa, calcium, and a multi-vitamin daily. My joint pain is not gone, but it is much better. I still have the protien in my urine. Sometimes I just need to talk, but I don't know if I belong on the RA boards or the lupus boards. I'm not sure that this is the place for me either. I am sorry this is so long, but I'm hoping that someone might be able to guide me in the right direction. I have more questions every day, and I will ask my doctors when I see them, but when you are in an HMO, sometimes it takes a while to see your doctors, or even get your calls returned. Should I assume that my kidney proplem and my other problems, joints, etc.. are totaly different issues, or are they in some way related? Thanks in advance for any suggestions where I might find support or discussion boards where I might fit in a little better. |
| Beth Witten | Re: undiagnosed (Currently 0 replies) Posted At 17:28:04 06/02/2002 I can only imagine how frustrating it must be for you to not know either what is causing your symptoms or whether the symptoms are somehow related to one another. Unfortunately, the Life Options Rehabilitation Program does not have the expertise to give you a diagnosis. Protein in urine can be a sign of kidney disease and I'm glad that you're seeing a nephrologist. I assume that the nephrolgist is monitoring your kidney function and you know what your kidney function is and are receiving treatment to protect your kidneys. If not, that might be a place to start. You said that a nephrologist wanted to test you for IgA nephropathy 10 years ago, but you were afraid and didn't have the biopsy he recommended. Now that you're open to knowing more about your health, have you asked your present nephrologist if it's possible that this condition could be causing your symptoms? There are online sources for more information about kidney disease to help you become an "expert patient" and participate actively in decision-making around your health. Check out the interactive Kidney School (www.kidneyschool.org) modules with tests, action plans, and certificates. You asked for information about support. You say your rheumatologist and your nephrologist have not given you specific diagnoses for your symptoms, therefore I can't suggest a specific support group for that condition. However, you might want to go to Yahoo (http://groups.yahoo.com/) and do a search either under Health & Wellness or by typing in any of your symptoms in the search field. One of the most active online support groups for people with kidney problems called Dialysis Support (http://groups.yahoo.com/group/dialysis_support/). Perhaps you can post questions there. Remember to ask your doctor before you follow any suggestions you get from from the Internet or any other source. |
| Martha | Re: undiagnosed (Currently 0 replies) Posted At 17:05:32 06/04/2002 Hi Beth, Thank you for your reply. You are correct, my current nephrologist is monitering me, and also has me self monitering and charting my blood pressure at home 2 times per day, morning & evening. He also has my records from the prior nephrologist. He believes there are too many possibilities to suggest a diagnosis based only on labs. Right now my function is well enough that he is not rushing the issue of a biopsy. He said perhaps sometime this year. I am trying very hard to keep my patience. I was very upset at the possibility of having RA, until the possibility of lupus was mentioned. I have came to accept the possibility of RA, but I hope and pray that I don't have lupus, or a kidney disease. Is it possible to have perfectly healthy kidneys, and just be a rare case of someone who leaks protien into their urine? If not, what are possible causes that I could try to learn more about? Most of the information I keep finding seems to sum it up as chronic kidney disease or something vague. |
| Edward | Re: undiagnosed (Currently 0 replies) Posted At 00:34:48 07/11/2002 Hi Martha Reading your story reminds me so much of my mother, she has and has had everything you mentioned in self-bio. After years and years of hospitals and one docotor after another we found that my mother suffers from amyloidosis. please read up on it and e-mail me information on what your doctor gave you to help with the high count of protein in your kidneys. Leave a number so we may talk and maybe help each other. |
| Joyce | Re: undiagnosed (Currently 0 replies) Posted At 09:04:17 07/14/2002 Yourletter sounds like I could have written it. I was diagnosed with a kidney disease at 30. It was chronic nephritis. I had two biopsies. I was also sent to a rhuma/arthritis doctor. I was diagnosed with polymalgia which affects my neck and hips, after having a high sed rate on blood test. I also take the prednislone and gained about 40 lbs. I can work my way down to 1/2 a day and the pain comes back and back to the prednislone. I also have surgery scheduled for Aug. on neuromas on both my feet. I do no think that it is all related tho. |
| Joyce | Re: undiagnosed (Currently 0 replies) Posted At 09:07:04 07/14/2002 I was diagnosed with the chronic nephritis at 30 but I failed to say that I am 63 now. Still have the high protein and albumin in my urine but otherwise the kidney function is doing o.k. |
| Annette Lambeff | Post surgical requirements after removal of Morton's Neuroma (Currently 4 replies) Posted At 20:14:58 08/06/2002 I have been wearing metatarsal domes for weeks now, but with little improvement in the condition (which has been identified via altrasound scan). If I have the Neuroma removed via the dorsal approach, how incapacitated will I be after the operation, i.e. how soon will I be able to walk, go back to work, etc. |
| Beth Witten | Re: Morton's Neuroma (Currently 0 replies) Posted At 13:21:54 08/08/2002 Life Options' expertise is in the area of rehabilitation related to kidney disease. This question is outside our area of expertise, however, I was able to find a couple of patient education fact sheets on this condition: http://www.medicalmultimediagroup.com/pated/foot/neuroma/neuroma.html and http://orthoinfo.aaos.org/fact/thr_report.cfm?Thread_ID=233&topcategory=Foot. As with any health condition, talk with your doctor or surgeon about what to expect during and after surgery, what you should and should not do during your recuperation, how long it takes most people to return to their usual activities, and what you can do to improve your chances for a fast and full recovery. Keep in mind that your recuperation may take more or less time than average. |
| Donna | Re: undiagnosed (Currently 0 replies) Posted At 05:49:05 08/13/2002 My doctor has said i have blood and protien in my kidneys. Ive had blood tests, and xrays, i have to have a scan and a camera, inserted into my bladder. I am worried, could you please give me some advice. Donna |
| Pat Carson | Re: undiagnosed (Currently 0 replies) Posted At 15:07:36 08/19/2002 I can't comment on the kidney diagnosis. However, to Donna I can say cystoscopy (camera in the bladder)is quick and painless (for a woman). Go ahead and have it done. I had this procedure 15 years ago after six doctors over three years had told me there was nothing wrong with me. It turned out the reason I was visiting the toilet, by that time, 20 times a day instead of three, was bladder cancer. By that time it was too late to save the bladder, but soon enough to save my life. As for the neuroma, my podiatrist was horrified at the idea of surgery which he said would destroy all the nerves in the area. Instead, he prescribed custom orthotics which soon corrected the problem. |
| Pamela Joy | Re: undiagnosed (Currently 0 replies) Posted At 21:01:05 10/01/2002 I recently gained 20+ lbs in 2 weeks, I have had bypass surgery on my stomach so the idea of gaining that much weight is not very likely from over eating. I had an ache in my lower back and went to see the doctor. All tests came back fine except I had protein in my urine. Blood tests all came back fine, everything, even the kidney funtions. I did a 24 hour urine test and my protein went from 300 to 1294 from the first urine test to the 24 hour test. The doctor has recomended that I see a Nephrologist. I feel like I'm clueless... nobody will really tell me anything.. should I be scared?? I'll tell ya, right now I'm terrified.. any information about what I might expect.. what I should look for.. do I have cause to be this afraid.. I would appreciate any information I can get.. |
| Beth Witten | Re: undiagnosed (Currently 0 replies) Posted At 22:17:29 10/06/2002 I'd definitely make an appointment with a nephrologist as soon as possible. The nephrologist should be able to use the tests you've already had and possibly run others to find out what is causing your recent weight gain and the protein in your urine. Before you see the doctor, I'd suggest that you make a list of questions so you don't forget anything important. Some things to consider asking include: * Why do I have protein in my urine? * Why have I recently gained weight? * From the tests I've had, can you tell whether my kidneys are damaged? * If so, how much kidney function have I lost? * What other tests will you need to do? What will they tell you? * What can I do to protect my kidneys? * If I do what you suggest, how will this affect my kidney function? * Where can I find more information about my illness? Be sure to tell the nephrologist your full medical history, including past illnesses, past surgeries, and drugs (prescribed, over-the-counter, recreational) you've taken. This should help the nephrologist get a fuller picture of you. Good luck! |
| ang | Re: undiagnosed (Currently 0 replies) Posted At 15:59:27 10/22/2002 HI I have had for many years wear and tear of 3 discs . and recently i have had a lot of pain in my joints and all over pain , I have also been diagnosed with parvo virus arthralga/fibmyalga/myalga is this a form of arthritis, and how long will it last for. |
| Beth Witten | Re: undiagnosed (Currently 0 replies) Posted At 23:12:04 10/28/2002 The questions you asked are probably best directed to your doctor. I'd ask what the diagnoses mean, how parvo virus can affect you, what treatment has been shown to be effective, how effective is it, and when you'll start feeling better if you get that treatment. |
| mike | Re: undiagnosed (Currently 0 replies) Posted At 17:00:56 11/25/2002 IT sounds like you have reiters syndrom. you need a genitic test b52 type If joint envolment is of the little toes or other extremites. Look it up |
| jillian | Re: undiagnosed (Currently 0 replies) Posted At 13:36:20 01/05/2003 Hi i just went to the e.r. for what i thought was an uti infection, when doing my urine sample they found traces of blood and high amounts of protien in it, should i be concerned about this? Does this mean i could be having kidney problems? Someone help please!! |
| Beth Witten | Re: undiagnosed (Currently 0 replies) Posted At 22:11:58 01/10/2003 Blood in the urine is called hematuria. It can be a sign of infection, kidney stone, tumor, etc. It can also be a sign of kidney disease. Large amounts of protein in urine is not normal and is called proteinuria. It can be a sign of kidney damage or disease. I would strongly recommend that you make an appointment right away to see a kidney specialist (nephrologist) who can perform tests to find out what is causing your symptoms and prescribe treatment to protect your kidneys and kidney function. |
| Pam | Re: undiagnosed (Currently 0 replies) Posted At 18:21:57 01/12/2003 I have mild IgA - no protein in my urine, low/normal blood pressure and microhaematuria. However, I get mild pain in the lower back and ribs intermittantly but regularly - is this 'normal'?? |
| peggy cordray | Re: undiagnosed (Currently 0 replies) Posted At 17:02:19 04/15/2003 HI I AM 44 YEARS OLD AND WAS DIAGNOSED WITH IGA, ABOUT 15 YEARS AGO. I HAVE HAD 3 HEARTATTACKS, AND MY COLEST. IS 217, AND MY DOCTOR, HAS BEEN TRYING TO GET A HANDLE ON IT FOR 1 1/2 YEARS. I HAVE GAINED ALOT OF WEIGHT IN THE LAST MONTHS., TRYING EVERYTHING TO GET CONTROL OF THIS, NOTHING IS WORKING !!IS THIS NORMAL? AND IS THERE ANYTHING THAT I CAN DO,? THAT I HAVE NOT TRIED. I HAVE JUST LEFT, MY KIDNEY DOCTOR, I HAVE ALOT OF PROTIEN, AND BLOOD IN MY URINE AND I AM DOING A 24 URINE SPECIMENT, BLOOD TEST, AND EXRAYS, I AM HAVING A HARD TIME BREATHING, I THOUGHT IT WAS ASHMA, BUT NOW I HAVE LEARNED IT COULD BE FLUID ON THE LUNGS. MY BACK AND LEGS HURT ALOT THAT I DONOT SLEEP WELL AT NIGHT. WHAT AM I LOOKING FOR IN THE CLOSE FUTURE. ? AT THIS TIME I CAN NOT TALK TO ANYONE IN MY FAMILY OR FRIENDS I AM THINKING THE WORSE, AND JUST CRY. HELP SOMEONE. AND DON'T SUGAR COAT IT. I NEED TO KNOW ANYTHING AND EVERYTHING THAT COULD COME MY WAY. |
| Beth Witten | Re: undiagnosed (Currently 0 replies) Posted At 00:00:31 04/22/2003 I can only imagine how frightened you are, not knowing what is causing your symptoms. It sounds like your doctor is running tests to find out what your current kidney function is. Many times people have symptoms of kidney disease but think they have the flu because few people know kidney disease symptoms. Some symptoms of kidney problems include protein or blood in urine, unexplained weight gain, back pain that is unrelieved by getting in another position, shortness of breath, fatigue, problems sleeping (usually too much), memory problems, itching, poor appetite and/or food (especially meat) tastes funny (metallic), and more. If your doctor finds out that you have kidney disease, it is not the end of your life. There may be treatments that can slow the progression of kidney damage and even if your kidney function drops to 15% or less, you can do dialysis. A lot of times people feel better after a few dialysis treatments remove extra fluid and wastes that have built up as kidneys are failing. People on dialysis and with transplants find that they can work, go to school, exercise, visit friends and family, travel, have hobbies, read, watch TV, eat out, and do many of the things they did before they became ill. There's a lot of educational information on kidney disease on the Internet. One place where you might start looking about lab values and symptoms is Kidney School (www.kidneyschool.org). Other helpful web sites include: * National Kidney Foundation (www.kidney.org) * American Association of Kidney Patients (www.aakp.org) * American Kidney Fund (www.akfinc.org) There are also online support groups and some NKF affiliates and dialysis and transplant programs offer support groups. No one would deny that the diagnosis of kidney disease is frightening, but you can learn what you need to know to live a good life with kidney disease. |
| sylvia loggins | Re: undiagnosed (Currently 0 replies) Posted At 23:17:16 06/09/2003 as far as the protein in the urine, that's totally not something i'm dealing with, although i can concur with the joint pain and some of the swelling. my swelling and pain is mostly around my ankles and between the top of my foot where my leg starts. sometimes i have so much pain in my feet, i hate for anyone to touch it. doctors can't seem to be able to find what the problem is from all these tests they are doing and i'm at my wits end. i've had problems with my feet over a year ago and the symptoms seem to be getting worse everyday. if they don't soon find out what's going on i may lose my job, but i can't work like this. now the pain seems to be striking at my knees and hips. most of my pain is affecting one side which is my right side but yes, i still have some of the same symptoms on my left side just not as bad. might somebody be able to give me so advice quickly? |
| sylvia loggins | Re: undiagnosed (Currently 0 replies) Posted At 23:17:46 06/09/2003 as far as the protein in the urine, that's totally not something i'm dealing with, although i can concur with the joint pain and some of the swelling. my swelling and pain is mostly around my ankles and between the top of my foot where my leg starts. sometimes i have so much pain in my feet, i hate for anyone to touch it. doctors can't seem to be able to find what the problem is from all these tests they are doing and i'm at my wits end. i've had problems with my feet over a year ago and the symptoms seem to be getting worse everyday. if they don't soon find out what's going on i may lose my job, but i can't work like this. now the pain seems to be striking at my knees and hips. most of my pain is affecting one side which is my right side but yes, i still have some of the same symptoms on my left side just not as bad. might somebody be able to give me so advice quickly? |
| martha | Re: undiagnosed (Currently 0 replies) Posted At 05:54:41 06/11/2003 Hi Martha, I feel so sorry for you as I too have mysterious medical problems.I also have Mortons Neuroma amongst a whole lot of other diseases including depression and aching joints and have had kidney stones due to Hyperparathyroiditis.I have just been diagnosed with Rickesttsia which is a Tick born virus which can only be detected by a special test.Not many Doctors seem to be interested in this serious emerging problem.It causes Chronic Fatiguge like symptoms and aching joints just to name a few. Lyme disease and Lupus seem to be associated sometimes with this disease.You may have to persuade you Doctor to get the test done.You may not have it but it is worth a go to rule it out.Look it up on the WEB. Rickettsia. Good luck Carolyn |