What are symptoms of nephrotic syndrome?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/21/2009 9:20 PM (GMT -7)   
This "retroaortic left renal vein" is supposed to be common in lupus and cancer patients and causes nephrotic syndrome. I'm in a ton of pain now and have beenso long I'm going nuts from it. My new primary care doc thnks that because my retroaortic left renal vein is "of common variant", which means it takes the most usual path between two arteries, that it is not abnormal and doesn't need any testing or treatment. It is ridiculous. I gave her several articles about howit can cause death from aneurysms, causes kidney and adrenal damageand loss, causes destructions of lower veins, development of other not normal vein routes, and besides all that, it hurts like the dickens!!!!
 
First she was going to refer me to a vascular guy, then decided, without me going to see them, that it would be a waste of time, since she decided nothing is pinched because she hasn't run any tests to determine if anything is pinched, despite my symptoms. Then she said I should see a nephrologist instead.  Well now she decided she isn't doing that, despite my hx of kidney problems as a child and symptoms and positive p-anca.  She's doing no bloodwork, no venogram, no nothing, AND she sending me for a big shot of cortisone which will really mess me up, last shot I went into addisonian crisis.
 
So now I guess I sit back and wait for nephrotic syndrome. Can anyone tell me what the symptoms are? What should I do about my doc? You can't fix stupid. Is a caring doc so hard to find? Oh, and I still don't have lupus. ;) Just sjogrens and 13 other disorders common to lupus.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 5/22/2009 7:47 AM (GMT -7)   
Oy. I hate doctors like that -- I think we insult them when we suggest an answer. I suppose that makes them act poorly - they are just human, darn it! They should "rise above"

Can you go to the vascular guy with her, or do you have to have a referral? I think I'd be staying the the market for a new dr, this one doesn't seem like she's on the same page as you AT ALL!

Post Edited (Lynnwood) : 5/22/2009 9:02:05 AM (GMT-6)


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 5/22/2009 11:17 AM (GMT -7)   
Thanks Lynnwood. I'm running out of options and most of these docs know each other, too well. Sometimes there's a conspiracy by docs to get someone good care, and that's great, but sometimes there's just a conspiracy to dismiss people, or just say they are too messed up to fix. I could see if I were 90 and all but I'm only forty-something, which is entirely different than thirty-something. They need to make a show.

My neuro people called to remind me that they will be giving me steroid injections in my back, to remind me of this, and I told them I had an endocrinologist appt a few weeks later and would it mess up any labs they order, and they said no. I don't know if this is true. These people around here just make it up as they go along.

I did send my stuff to my leg vein guy and he does do abdominal vascular surgery and his nurse said he'd talk to me about it on my visit. I am so sore in the kidneys, on pyridium and having colorful pee now, self-administered. They just give it to me PRN now. No antibiotics though...duh. My dermatologist is shaping up to be the best informed and best doc of all of them.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


curlyhair
Veteran Member


Date Joined Jan 2005
Total Posts : 659
   Posted 6/7/2009 11:27 AM (GMT -7)   
Cured
I truly hope you are feeling better since your post. I saw your question about nephrotic syndrome and am able to answer that. It is characterized by high urine protein, low blood protein and severe fluid retention. It sounds like you need to see a nephrologist but I realize referrals are necessary most of the time. I would push for one because your problems should be checked by a specialist. Good luck and keep us updated.
Sandy
DX: Nephrotic Syndrome, Membranous Nephropathy (? Lupus Nephritis) 2002
DX: Raynaud's Phenomenon and Lupus (SLE & Class V Lupus Nephritis) 2005
DX: Anorexia and Hypokalemia 2006
DX: Hpercalcemia, Hyperparathyroidism, Gout 2009
 
 


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/7/2009 4:33 PM (GMT -7)   
The only cure for Chronically Bad Medical Advice Syndrome is a new Doctor who is not an egomaniac or an idiot.
Good luck in finding one.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/7/2009 7:35 PM (GMT -7)   
I've had renal involvement for 10 years.  I am in and out of the nephrotic syndrome.  It is when your kidneys allow protein to pass through the glomeruli in your kidneys.  It has to be within a certain range to be considered nephrotic.  Some symptoms include elevated blood pressure, swelling/puffiness around the eyes and ankles.  I never had any pain directly related to renal failure or nephrotic syndrome.  Nephrotic Syndrome can be difficult to treat and needs to be treated aggressively because it damages the kidneys and becomes a vicious cycle. 
 
I truly pray you get some answers soon!  God Bless You, Judy
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