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Hippiemom I have a couple of questions

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Chronic Fatigue Syndrome
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Posted 6/11/2006 8:38 PM (GMT -8)
I have read a couple of posts where it seems you'v been sick with your kidneys. I was wondering if it isnt too personal, I have had problems with my kidneys,  blood, protein, in urine pain. They ran gammets of tests over and over, and cant find out why I'm having problems. Could this be from CFS/FM? I remember one night at the ER the resident came in mubbled about this was too high, this was to low and threw up his hands and said it doesnt make sense none of it makes sense, I have to talk to a couple of the doctors and I will be back. I just laughed at him......I almost always have some anomilies in my blood work. Last weird one was elevated liver enzymes. Everything eles normal. They did all kinds of tests and everything came back normal, Ive had all kinds of urine, blood, and imaging done. The DRS cant ever figure it out so ignore it.  The only reason I'm a little concerned with it is I came across this CFS/FM memorial site, and they claimed all these people died from FM/CFS. It creeped me out, I was under the impression that you cant die from FM/CFS. Then I read a story about a woman who they claimed died from CFS/FM and the autopsy showed no anomalies, nonething wrong. I went through this one bad episode where I kept thinking that was going to happen to me.......I dont think that any more, I mean I was having a very sever episode, I felt like I was dying. Did your problems start out here and there and then increase in frequency and severity? or did it just become a sudden problem? I just wondered if I should stay on it, be on the look out, I mean obviously its not showing up on the tests so should I be concern? Thanx Hippiemom, hope you feel better.
Posted 6/12/2006 5:02 AM (GMT -8)
Definitely stay on top of things. Protein and blood in your urine without an infection almost always means that your kidneys aren't doing their job. It's also interesting that you have the elevated liver enzymes. I had elevated liver enzymes when I was first diagnosed with CFS and then again later after lupus was suspected. about 2 and a half years ago I got really sick (after a long remission from CFS) and I could tell it was more than CFS. SOme of my bloodwork I had done indicated lupus so I was referred to a rheumatologist and she has been treating me for lupus. My own theory and personal opinion is that people with CFS and FM really need to monitor their symptoms closely and get labs done whenever there is a change in symptoms or symptoms get much worse because they could be developing an autoimmune disease such as lupus. I've never heard of people dying from CFS or FM, my guess is that these people developed complicating factors on top of the CFS or FM. For about the past 2 years I've had protein on and off in my urine and then about 6 months ago I always had significant protein in my urine, so a 24hr urine test was done and it was elevated but not high enough to indicate kidney damage - my kidneys aren't working correctly but at least there is no damage yet. The good news is there are a lot of meds to protect kidneys now. Have you a rheumatologist? I would highly recommend that you get all your labs together from every place you have been that you have had abnormal bloodwork (I know it's a pain, but it's the only way a doc is going to put the peices of the puzzle together). The thing about CFS and FM is abnormalities should not show up in your bloodwork (aside fron the ebv for CFS). If there are abnormalities, you are probably dealing with another illness on top of CFS/FM. A lot of people with lupus, RA, etc also have FM. Please stay on top of this and insist that docs figure this out. Kidneys are nothing to mess around with. I just saw a kidney doc and he said if blood shows up in my urine along with the protein, he would have to do a kidney biopsy. ANother option you have is to see a nehrologist (a kidney specialist) to help you figure out why you have protein and blood in your urine. ANother oprion is to request a 24 hour urine test the next time protein shows up in your urine - if it is fairly high, you will probably get sent to a nephrologist. If you have any other questions, please ask. I know how frustrating and scary all of this can be. Take care
Posted 6/12/2006 4:54 PM (GMT -8)
Hippiemom, you know you had been on me about lupus from post one and I kept ignoring it. I have discoid lupus, but my ANA is negetive, right. But I have a little voice saying you could be the 5% that dont present with a positive ANA. I have hairloss, and photosensitivity, well I have a lot of the systemic symptoms, I have had this darned lesion that wont heal, it starts to heal, and then bam, overnight worse than before. I have an appointment in like three months with a RHUMEY, I am calling around to see if I can find a better doctor, who can help me, I feel that when I do finally get into a Rhumey's office, I will be DX'd with SLE along with the Fibro, and CFS. You know, Ive been falling apart for years because I let the DR neglect me, and I'm trying to not get overwhelmed. Now the kidney, liver thing.........your a voice of reason, its like hearing you say what I'm think doesnt sound as crazy. I had a 24 hr urine and here are the results if you dont mind:

VMA   4.2

Creatinine 0.98

Metanephrine 89

Normetanephrine 313

Total Metanephrine 402

All normal values according to the lab who processed it; I have learned different labs can use different normal values, so I dont know. Its like sometimes I'm normal, somtimes I'm not. In past 3 months alone I have had blood and protien in my urine like 5 times. One thing about my care providers is they run tests, the same ones over and over. I was surprised to see that some DR wont even try to get test run. Anyhow I tend to have a problem not worring about something unless its a current problem.  I do fear that my kidneys and liver will become damaged one day if I dont keep bringing it up with the  DR. Like what if I have SLE and they dont catch it or the damage be for its to late? I can see it now," you have SLE and we now know this because your going to need a kidney transplant", and also the part where you say elevated liver enzymes at the start of each DX. Its suspescious(sp) to me. I even get mouth ulcers and thrush, so I'm getting tested for AIDS this week. I was like hey SLE! only people with AIDS and Lupus get thrush all the time, like me. I have to have labs drawn all the time, I try to do them all at once, usually 3 a week. This week the AIDS and B1, B12, and some other cant remember, oh wait I did that one last week the mri on lower back. Its just stupid to me, the same labs over and over, but I do it, because I was a nurse at one time and tend to look at things that way sometimes, and I hated uncompliant patients. So I do all these stupid labs to show I'm compliant. Now when it comes to meds its a different situation LOL. Well thank you for your time Hippiemom, I really think your right about this thing, I guess sometimes you have to get worse to get better, Hope you feel better and that you dont need that biopsy, had a friend that had one and they did even give her pain reliever to go home with, I felt so bad for her, she wasnt used to pain like us. Thank you again MAD

Posted 6/12/2006 6:17 PM (GMT -8)
Speaking of the ANA test, there are some members on the lupus forum that it has taken a long time for the docs to catch a positive ANA. The ANA can fluctuate from positive to negative and sometimes a positive can be hard to catch. I'm not familiar with some of the values they tested in your 24 hr urine test, but I don't see total protein on there. I really hope you find a really good doctor who will try to piece this all together for you before things get too bad with your health. It's too bad you have to wait so long to see a rheumy - hopefully you'll get a good one. Hang in there.
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