I have been diagnosed with Minimal change disorder at 39. Back in late October 2016, started having the symptoms, fluid retention in the lower extremities, foam in the urine, etc. My PCP was doing nothing but pill after pill until finally I went to the hospital. Blood tests, urine samples, hospital stay and kidney biopsy all came back with Nephrotic Syndrome, MCD. I am on steroid therapy, which is working. No auto immune disorder can be tied to my condition. No family history either. I have read up that in adults, an allergic reaction could cause MCD. I have asked my Nephrologist if running blood allergy tests could help narrow down the cause so I have something to work with after remission but he doesn’t think it would do any good. What are your thoughts and should I seek a second opinion? Thank you for any insight you give me.

Minimal Change Disease (MCD) also called “nil” disease is a common cause of sudden nephrotic syndrome and will cause sudden swelling with loss of protein in the urine (proteinuria).  The cause has never been determined.  It is thought to be partially allergic because of the sudden onset and many times we see allergic cells called eosinophils in the kidney biopsy, but allergic testing has never been helpful, because a specific allergy has never been related to a relapse of the disease.  Occasionally, MCD can actually precede certain blood disease such as Hodgkin’s disease.  I do not advocate allergy testing and you do need careful follow up to make sure the disease goes completely away and that there is no relapse after the disease is in remission.  While MCD can be cured, only time will tell as a substantial number of adults can have a relapse of the disease that requires re-treatment.

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