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Help recently diagnosed and dont know what to think

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Old 05-06-2012, 07:59 AM   #1
Join Date: May 2012
Location: Elmira, NY, United States
Posts: 8
troads HB User
Exclamation Help recently diagnosed and dont know what to think

Hi everyone, I am new to the site and message board posting, but I really want some help, opinions and most of all a diagnosis that I know I cant get here but for sure a starting point and probably some peace of mind. Anyways here we go....

I am a 27 year old female who takes pretty dang good care of myself. On Feb 20, 2012 I went to the doctor for groin, and back pain. The doctor said I had a hernia, now to save some time..I have an inlarged lymph node that has been missdiagnosed three times and now I have the diagnosis of Nephrotic syndrome. I will give some information on the things I have had done so far because at this point I do not know what related to what. In advance by questions are: Does anyone else know what might be going on? When should I freak out? And how long until I get results?

The lymph node has been biospied and the preliminary results thus far are that it is NOT cancer and because I was put on a high dose antibiotic they believe it is not an infection. The only thing I have significant with the lymph nodes is that I have "shotty lymph nodes" because some are enlarged in the groin and abdomin area but nothing really big.

When I was refered to a nephrologist/internist he order a slew of blood tests, and ct, and a kidney biopsy heres what I have so far:

-Kidney biopsy was done on April 25th 2012 and still no results, they have to get shiped and analyzed about 3hours away because my town dosent have the lab equipment, espcially some big microscope they keep mentioning about a flourescent thing (sorry for not knowing everything thats why I came here). How long until I get these?

- Ct of the chest with IV contrast appeared normal.

Blood results:
- WBC is normal
-RBC is normal
-Calcium is low my results were 7.8 normal is (8.9-10.3)
-Glucose is low my results were 71 normal is (74-118)
-BUN is low my results were 5 normal is (8-20)
-Total protein is low -- 4.3
-Albumin is low -- 1.8
-Alk Phos is low --25
-Negative for all Hepatitis's
-RA factor --10 ----- this I do not understand
- Hgb is high --- 15.4
- C4 Complement, Functional is high ---54 reference range: 22 to 45
- C3 complement, Function is normal ---46
- ANA is positive
- Alpha -1 Globulin is normal ---0.2
-Alpha - 2 Globulin is high ---1.2
- Gammaglobulin is low ---0.4
- Sed rate is ellivated ---38

I have had three work ups of blood and since Feb 21st everything has progressivly decreased such as the calcium started out at 8.2 and the BUN started out at 7 and so forth. Does anyone have any suggestions thus far with why everything seems to be steadly declineing?

Now 24hr urin results:
- Specific Gravisty ---- >1.030
- Protein ----- >300
- Blood ------ Large ---Thats what the say I do not understand this either because I do not see blood in my urine just really bubbly urine or as they say foamy. I know I am wasting protein in my urine and one doctor said " wow more than 8 grams of protein a day your loosing".
- WBC ---- 2-5
- RBC ----- 10-15
- I do not understand this but for another lab slip for the 24 hour reads
- "24Hr Ur Total volme 1300"
- "Urine Total protein : >600 MG/DL"
- " 24 Hr Protein : >7800.0 (0-165) MG/24hr" ---is this saying that normal is 0-165 and I am way over more than 7800???

Another cest x ray said my lungs are good.

So here are my commplains -- I wake up every morning with bad abdominal pain, and back pain someties I feel like my back pain radiate to the front. The back pain is mid to lower starting around my ribs, and seems to be on both sides. I have sever edema in my legs but the swelling is all over (legs, feet, back, stomach, and in the mornings it is my face and neck, somtimes my hands as well). Lately, I have been getting a percistant caugh that kinda comes and goes but when it comes it lasts for about an hour and its more like a dry caugh. Also, I feel exhausted after just walking for a minute or standing for a few. For instance I was cooking some dinner last night and I couldnt finish because after just a few minutes I felt uneasy such as off balance and headach. I have been having near fainting spells lately as well, it seems to start with a cold feeling in my upper back near my neck and then I just get cold and white in the face and feel the urge to vomit and just feel really dizzy. Another thing I noticed as well is that my thoughts seem to come and go really quick. And lastly, this is gross but I noticed for the past three weeks roughly that my poop seems compacted and slimy. One doctor (not the nephrologist but the pathologist) suggested that the abdominal pain may be that I might have fluid build up inside causing pain since I have edema. Now another question is that with the poop could all the stuff going on with my kidneys be causing this since I eat a healthy diet?

Lastly I am sorry that this is so long...But the nephrologist had suggested that he thinks I might have lupus but hes waiting for the kidney biopsy results. I do NOT think I have this because I have no nail, hair or skin problems no rashes or nothing that relates to the symptoms of lupus. I just dont know what to think and when to freak out and go to the er with all the congnitive issues that have started to appear. And I hate not knowing what may be going on. Can anyone offer their suggestions opinions or comments on this. Thank you so very much.

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Old 05-07-2012, 04:06 PM   #2
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Re: Help recently diagnosed and dont know what to think

troads, hi & welcome. I'm so sorry you're having problems. I believe it's definitely possible to have lupus without nail, hair & skin problems. In the sticky posts (permanent info posts, at top of thread list), you'll find the ACR criteria for diagnosing systemic lupus. Of the 11 criteria listed, one usually---but not always!---must meet at least four to sustain a dx of SLE.

People who present with kidney filtering as their main issue might be terribly surprised, because kidney damage in lupus can be pretty "silent" in early stages. And because kidney problems, whether caused by lupus or something else, require fast & certain treatment, it makes sense to me that your nephrologist called for a kidney biopsy.

A quick comment re: your labs. You said your ANA is positive. Were additional, more specific autoantibody tests run? For example, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc? These tests are typically run if lupus is suspected. ANA is only a "general" test that's positive in mulitple conditions, not just in lupus, so those additional, more specific tests are very important!

As far as your symptoms go: a friend had kidney failure caused by something different; he had similar symptoms, but his came on VERY rapidly. When kidneys aren't functioning properly, this can in turn cause other other major organs to fail. Honestly, in your shoes, I'd pester the nephrologist for results. Tell him your symptoms are worsening & that you need answers. I hope you get clarity and help soon---and that you keep posting here. With my best wishes, Vee

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Old 05-09-2012, 02:59 PM   #3
Join Date: May 2012
Location: Elmira, NY, United States
Posts: 8
troads HB User
Re: Help recently diagnosed and dont know what to think

Thanks VeeJ.

I did finally get a reply from the doctor today he diagnosed me with Membranous Nephropathy. He didnt say anything about lupus, but does want to run more test. I have read how Lupus can be tied to kidney problems and even this Mempranous Nephropathy so I can imagine he will run the tests you mentioned. Sadly I was just so happy to finally get a diagnosis that I forgot to ask. Now, my only thing is that I may need to turn to the kidney message board because he did mention a drug that started with a c that causes infertility that he wanted to talk about and possibly try. I wish I knew the name so that I could look it up.

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Old 05-09-2012, 04:31 PM   #4
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Re: Help recently diagnosed and dont know what to think

Troads, I'm so sorry you got that answer, but glad that you'll now get treatment. Let us know how you're doing, when you have time, OK? Anytime you want to talk, we're here. Sending all my best, Vee

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Old 12-06-2014, 05:05 PM   #5
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Location: Canada
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ker707 HB User
Re: Help recently diagnosed and dont know what to think

Troads, it's been a couple of years since you posted your Kidney issues - how have things progressed for you? I hope your treatment is working for you!


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