Loin pain hematuria syndrome (LPHS), possibly autoimmune

Posted by student672 @student672, Dec 1, 2021

This is going to be a long-winded discussion, but please bear with me, as I really need some help. So this all started when I first had an episode of hematuria around the beginning of August after presenting with right flank pain. I went to the GYN and there, she ruled out cysts and found hydronephrosis on an ultrasound. Kidney infection was ruled out, and a CT scan with contrast was preformed where no abnormalities except for free fluid on the left from a ruptured ovarian follicle- 2x2cm. Underwent a cystoscopy and stereoscopy with my urologist where they found a mild UPJ obstruction and they placed a stent which caused too much pain itself to tell any improvements. I then had a renal scan with Lasix where there was no evidence of obstruction other than mild dilation. I then was sent to the Nephrologist where bloodwork was preformed that showed positive antinuclear antibodies and positive rap antibodies, and I can also see that Urine WBC was high and there was trace bacteria in the urine as well as proteins and ketones with 2+ blood. My serum myoglobin was also low. A biopsy was ordered to test for possible lupus, but findings came back completely normal; no abnormalities in glomeruli or anything.

As of right now my diagnosis is Loin Pain Hematuria syndrome, which is pretty rare and a depressing diagnosis with the only thing to help is pain management or an autotransplant. As for my symptoms, I have reoccurring hematuria, as well as chronic right flank pain that gets worse with physical exertion. The pain has been increasing and is impeding on my daily life. I have decreased energy levels, high thirst, more frequency and urgency with urination, occasional low appetite, slower healing wounds, brain fog, swollen lymph nodes in neck, and I have always had trouble swallowing which I know is related to some autoimmune disorders. I have a history of asthma, anemia, and possible Raynaud's syndrome, and a family history of kidney stones, lupus, PCOS, Addisons, and Graves. I could really use some help on this, I am going to Mayo to get a third opinion. I am not sure if finding the antibodies was just a chance finding and I could show signs for an autoimmune disease in the future and it is unrelated to my renal issues, or if there is something we are missing.

Interested in more discussions like this? Go to the Kidney & Bladder group.

@student672 Welcome to Mayo Connect, where members try to help one another. None are healthcare professionals, but we all try to help with what we have learned through our own experiences. You certainly do sound like you are miserable. Does all this interfere with your daily life or are you able to live ‘normally’? You’ve seen several doctors—are any of them connected with a university medical center? When i first got sick with my autoimmune disease, none of the doctors locally were able to figure it out. So i ended up at a university med center where they knew exactly what was going on.
I did find this information from theNIH and hope you’ll find it useful
https://rarediseases.info.nih.gov/diseases/6920/loin-pain-hematuria-syndrome#diseaseOverviewSection
And, you say that you’re going to Mayo Clinic—have you gotten an appointment?

REPLY

It interferes in my life in that I am now looking for a different job because my current one needs me to move around a lot more than I am capable of anymore. I have gone to a University hospital for my biopsy, but other than that, I have not been to a doctor connected with a university medical center. I am hoping to hear about my appointment date today.

REPLY
Please sign in or register to post a reply.
  Request Appointment