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notsurerfh
01-12-2009, 08:37 AM
hey again all,

just getting nervous about this afternoon. i am having my consult for the kidney biopsy. i am worried they are going to find something but more worried that they just brush me off until it gets worse.
i haven't been feeling well at all this past week. severe headaches, fevers and stomach pain. Just not sure if it's related to the issue or another one coming out.
i really just want to know what is wrong with me so i can move forward. i am lucky to have a husband that tries to help. he gets fed up with it now and again but he assured me again for better or worse. i really hope its better news soon.

just wondering if anyone else on here has been diagnosed with nephrotic syndrome. i've done all the reading just curious if anyone else out there has an actual case instead of a text book explanation, makes it more real to me.

sits_inthe_corner
01-12-2009, 02:25 PM
Gentle hugs to ya notsurerfh

I haven't been formerly diagnosed with anything yet...and I've been at it a loooong time, so I share your frustration.

I've been told I have arthritis, but they haven't told me what form of arthritis, when I ask for them to be more specific, they do more blood work. The choises at this point are osteo, rheumatoid, or psoriac.

I've had mixed results from several ANA tests and lupus runs heavily in my family.

I hope your appointment went well. Let us know what you found out. :)

Saysusie
01-12-2009, 06:06 PM
Hi notsurefh;
I've never been diagnosed with nephrotic syndrome. I am glad to hear that you've studied the illness and have educated yourself about it. I hope that your news is good and, if it is not what you want to hear, please know that we are all here to help you.
Gentle Hugs
Peace and Blessings
Saysusie

mountaindreamer
01-12-2009, 07:30 PM
hi notsurerth,

how did your appointment go today. I saw a urologist, to discuss the results of my renal ultrasound, and then went to a nephrologist to discuss kidney function.

On christmas eve, my pcp called and said my blood work showed "borderline kidney function" with my creatnine level at l.09 and my GFR at 52. The ultrasound showed my kidneys as normal - "no operable problems" such as cysts or tumors.

The nephrologist ran his own blood work and will call in a day or so. I too suffer from the symptoms of lupus nephritis, but I am not sure if this is the same as your diagnosis.

the nephrologist feels we can monitor and keep my kidneys functioning at this level with minor invasive procedures and without high doses of cortisteroids.

I guess, I wonder if you have to go through the kidney biopsy, although i understand this is the only way to diagnose lupus nephritis.

I suffer from a lot of flank pain, and I understand that lupus nephritis does not cause pain. He thinks the lupus could be attacking tissue around the area of the kidney. Don't know what to think about all of this.

Let me know what your dr. says. I hope your day was good.

notsurerfh
01-13-2009, 01:21 PM
it went well. i will go in the hospital overnight sometime this week and they will take tisse samples from one kidney to analyze it. the only test left to find out why.

my kidneys are functioning and filter what they are suppsed to so no dialysis or anything along those lines. no cancer for sure. but i lose about 6000 red blood cells a day. almost 10 times the normal.

so i have low red blood cell count and this can cause issues too. so the biopsy is the only way to narrow it down.

i will keep you all posted with results and how the procedure goes.

sits_inthe_corner
01-13-2009, 04:49 PM
I'm very glad things went well for you today.

Yes please keep us posted on how things are going. Keeping you in my prayers :)

Danica01
01-13-2009, 11:17 PM
I am so happy your appointment went well today and I am also very happy you have researched your kidney problems. We are our own advocates when it comes to our health and you did the best thing you could do by educating yourself. I will be thinking about you this week and hoping that your hospital stay is short and that they find what they are looking for so that you can be more comfortable :) Keep your head up and hang in there. Remember, you have so many people here who care about you and are wishing for some answers and a fast recovery for you :wink:

notsurerfh
01-14-2009, 02:02 PM
monday is when they can get me in so just a few more days of waiting. but at least now i have a goal and a great doctor that is taking care of me. he actually listened to me and took my whole history and symptoms. he didn't shrug them off or talk over me. he actually mentioned that it may be auto immune and gave some treatment options. the ANA was negative and so was the RA but he said there are so many that it may be easier to treat it then to diagnosis it. so keeping my fingers crossed that the biopsy shows him what he needs to know. thanks again for all of your support you have helped me through some rough spots.