What is Porphyria
The porphyrias are inherited or acquired disorders of certain enzymes in the heme biosynthetic pathway (also called porphyrin pathway). They are broadly classified as hepatic porph...
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update, question on testing
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i was just in the hospital with severe stomach pain for 23 hours and blood in my stool. the gi is going to run all these tests next week and i'll ask him about testing for porphyria. my current blood doc is a nightmare and he ruined my second opinion consult. i've to find someone else soon; i hope my primary will go for it.
anyway, for this most recent episode (out of 2 since 12/31) from tues thru weds... for stomach pain they gave me dilaudid which made me quite looney at times, even feeling like i was going to stop breathing or pass out when they first gave it. but this strong med cut the pain in half to make my ordeal tolerable. then, weds eve it finally went away and i stopped the next scheduled dose of dilaudid immediately. it was horrible to take it; i was acting emotionally like i was very upset. then, the nurses weren't that great with getting me my proper daily meds (valium, norflex and oxycontin) for neuro issues from cerebral palsy, or advocating for further appropriate testing. finally, one nurse did do some simple testing and it got me out of the hospital and signed up for further investigation by the gi doc, after 2.5 days of waiting for him to show up. he thought it wasn't an emergency since i was 'only 30'. wtf, pardon my french. one thing i'd like to know: is it true that you have to be having an episode to be diagnosed, meaning the test results for porph will come out normal if you're not actively suffering? curious about that, if anyone can clarify so i can discuss this with the gi doc. i'll also call the national porphyria foundation on monday before i stop by his office to pick up the bowel evac stuff and instructions before procedures to determine if i've IBD, h pylori, ulcers or food allergies. thank you so much again for your support and help. Posted on 01/11/09, 11:01 am |
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Hi nikL,
First off, I'm sorry you are having such a rough time. The Porphyria screening test checks your PBG & ALA levels in the urine. In acute Porphyria, these substances are very high during and shortly after you are symptomatic. Yes, it's best to test when sick but equally important to have the right lab do the test & the right doc interpret the results. Check the American Porphyria Foundation website for detailed information on testing/labs & print it for your doctor. While you wait to be tested, I strongly encourage you to educate yourself about Porphyria. Check all your medications for safety on the Porph drug checker (APF website), follow the dietary guidelines (carbohydrates are a porph's best friend!), and avoid chemicals. My fave place for this info is YahooGroups 'Porphyria'. Their FILES section has tons of info & the members are very helpful. Hope this helps and that you feel better. Now, go eat a potato! :::grin::: 
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moon,
thanks for your info. yes, i did leave a message to the APF and hope they get back to me soon re finding a doctor in my area. I'm also educating myself about 'porphinurias' or 'porphinopathies' which is basically porphyria-like symptoms acquired from chemical exposures. I just made a list of known chems i react to for my GI doc who is going to put me under general anesthesia for further testing on thurs. at this point i'm not diagnosed with porphyria, just chemical sensitivity, which is one way that porphyria (acquired or hereditary) can manifest itself. i understand the mayo clinic is the premier place to get tested for acquired porphyria, and that APF doesn't really handle this specialized type of reactive, transient porphyria without hereditary origin. but I'm trying my best to get a second opinion from a different blood doc soon. yes, i do love carbs, so more excuse to eat them, lolz. thanks for your info!
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