Wednesday, June 23, 2010

Sunlight Urine Test 2

With no diagnosis, I wanted to prove to Dr. Premier - and to myself because at this point I'm discouraged, depressed, and starting to think I might be making all this up - so I did another Sunlight Urine Test. This time, I left the urine out in the sun for 48 hours and documented with photos every couple of hours. At the time, I didn't realize what a drastic change it was, but looking at the step by step photos, I'm now taking back my moments when I second guessed myself. I do have Porphyria, and here is my proof.





Unfortunately, photos don't get an official diagnosis. I did bring these to Dr. Premier and once again made him answer what else in medical history could make this happen to a person's urine. And again his only answer was porphyria. I feel like he wants to give me a diagnosis...he's not one of the mean doctors and I truly feel like he's on my side. However, his hands are tied in a way, because the medical community needs documented proof. The geneticist in Rochester, MN (who has been consulting Dr. Premier for a few months now on my case) says that I must have elevated porphyrin levels of 10 times or greater in order to receive any diagnosis... and without that I cannot receive treatments because they are too dangerous.

Typical treatments include a 10% glucose infusion via IV and/or heme infusion. I thought that glucose could be administered without a diagnosis, but with strong suspicion, but Dr. Premier looked into it and explained that the infusion is not the typical glucose IV that any patient would receive in the ER... in fact, it can be quite risky to a healthy person.

The only thing I can do is wait for an attack and perform another 24 hour urine... and pray that I'm sick enough (so ridiculous) to get the official diagnosis. After all, between attacks my levels are 6 times higher than normal... so hopefully I can reach that magic number - 10.

2 comments:

  1. It's great to know that I'm not the only one "detail oriented" enough to keep photos of her sun exposed urine and show it to her physician, friends and family because it changed colors like it's supposed to. I'm cheering for your "10" girl! :)

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  2. It sucks that this is such a pain in the ass disease to diagnose. Im in the present moment waiting for my results to come back- got half of it back- im "borderline" with my RBC porphyns- everything points to Porphyria- no other medical problem that I have found matches what I describe and nothing is genetic (I recently found out that my mum gets the same pain and she then told me that all the women in my family have it on her side too!)...

    Its unfortunate that I too am waiting for "another attack" so that I can get good enough results for them to make a difinitive answer- Im 6 months since I first got this pain and my family has had generations of this pain with no luck- I've been called crazy as well- "psychosomatic" they said- I had to see a psych- who CLEARED me of course- but being a nurse it was humiliating!! I contacted the porphyria foundation in Australia and the lady said that she has heared numerous stories similar to ours- she said it should be a diagnostic factor- as many people with porphyria have first been called crazy.

    Hope they diagnose it and you get to "10"... theres a porphyria FB group i just found before your page- looks like a good support group, take care!

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