Discussions By Condition: I cannot get a diagnosis.

wondering if symptoms are at all consistent with Lupus or something else?

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: come on miracle
  • December 24, 2008
  • 09:32 PM

Hello everybuddy.....my name is Nicolette and I'm 20 years old....I'm not overweight and I'm not a smoker, drinker or drug user.

I've come to wonder if some of the issues I've been experiencing are possibly caused by Lupus, or some other autoimmune problem....I can't help but feel like some of the problems are a bit to coincidental to be singular issues, and I'm just trying to "put two and two together" :confused:

*I've had Raynaud's phenomenon in both my hands and feet for as long as I can remember, and it's gotten worse over time...despite the fact that my Dr. insisted I would "grow out of it". I don't know anybody else who has this, so I'm not sure if mine's more severe than many peoples..but it is actually pretty miserable...my hands frequently go from red to purple to sickly white...I react to any temperature change at all and experience numbness and tingling with cold..it's a little embarrassing because people are constantly asking why my hands are purple =(

*I've gotten "canker sores" in my mouth and gums for a while, sometimes they are painless and othertimes they're quite bad making it hard to eat and brush my teeth comfortably....

*I've never experienced a butterfly rash or severe photosensitivity which I know is often present in women with lupus...but I am somewhat sure that I have some early signs of arthritis developing...my hands are often stiff (something I used to attribute to my Raynaud's) and lately I've noticed the fingertip knuckles especially on my middle fingers beginning to become crooked...they're slowly starting to bend outward...if I fall asleep wearing a ring, by morning my fingers are so swollen that I can't remove it without hurting myself...it just seems completely absurd for such things to happen to somebody my age, it's a little alarming =(

Over the past year, I began experiencing flank/kidney pain which my pediatrician attributed to a kidney stone/bladder infection. I didn't have any of the usual urinary tract infection symptoms, I felt more "fluish" than anything. Extremely tired, achey, sweating then cold etc.

She did not do a urinalysis, and I did not find any visible kidney stones in my urine but put me on a round of anti biotics anyways.

The kidney pain returned a few months later and after trying to just suck it up for a few days, I ended up in the ER...I had a cat scan and ultrasound done while there which revealed hydronephrosis or swelling of both kidneys, particularly the right. The ultra sound and catscan showed no visible blockage (IE stone, tumor, cyst).

The Dr in the ER did have my blood and urine tested, but told me little about it, only that there was no significant showing of bacteria in my urine to attribute to a bladder or UT infection. I'm not sure what the labs revealed about my blood, I wish I'd asked...the ER nurses and Dr's seemed to just be looking for signs of a kidney stone or bladder infection and nothing else. When I didn't have those, it was like they just didn't know what to say about the cause of the swelling. :(

The pain seems to come without explaination and I recently had a renal scan with radio active dye done to see if the swelling in my kidney was caused by a problem with "Plumbing"....the scan showed no signs of a collapsed tube requiring a stint, but the hydronephrosis remains. The urologist did say there could be scar tissue inside or outside of the kidney causing it to retain fluid and swell, but I'd like to know what on earth is causing my kidney to have scar tissue if this is so. The one thing that does seem to help is anti inflammatory meds like Motrin in high doses..problem is, that stuff makes me so sick to my stomach in high doses, I usually end up throwing up from it.

Anyhow, I don't know what to think at this point. I feel a bit silly "self diagnosing" but I am sick of not knowing what's wrong...for those of you who have experience with Lupus...what do ya think? Is it possible that I could have it without it being obvious in blood or urine tests? What should I do! Any input/suggestions/enlightenment on the subject would be very very very appreciated...thankyou so much

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