Dad had an attack at 6am this morning. He was given 1 unit of both Dilaudid and Zofran via IV. Dad had some relief but the pain came back. He was then given one unit orally and one unit in the IV of Dilaudid. He finally had relief around 8.30.
The test they used isn't very accurate. So this 24 hour urine collection that they are doing now will be the Dr. Roberts visited and said Porphyria is rare, only 1 is 100 thousand people has it. The screeningdefinitive test as to whether he has it or not. He also said it could still be the Ischimia. If this urine test comes back negative for the Porphyria, he will push for an angiogram. There is still a .1% chance that it could be a rare Carcinoid tumor.
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Hi,
I am sorry to hear about your Porph attack. Been there ... done that and I know it 'taint fun.
Have your other family members been tested?
While doctors may say that Porphyria is "rare" I would argue that. A more realistic and accurate statement would be that people are rarely tested for Porphyria, thus it appears rare.
Many people, especially those with Environmental Illnesses, MCS, etc.
will test positive for Porphyria.
A few Porphyria articles of interest.
http://www.mcsrr.org/factsheets/porphyri.html
http://www.herc.org/news/ehp/ziem.html
http://www.ehponline.org/members/1997/Suppl-1/daniell-full.html
Thanks for your comment. No one else in my family has been tested for Porphyria. My Dad has a history of "rare" diseases. His muscular dystrophy is a rare kind called "FSH MD" and he has had heart visus' which from what we have been told, are pretty rare. It's kinda funny in a strange way that this would fit the mold.
Thanks for the links. I'm about to go check them out now. Hopefully we'll find out what this is sooner rather than later.
-Paige
Hey Paige - This is Katie Clark. I'm so sorry to hear about your father's illness, and I'm wishing all the best! I wanted to let you know that I work in the Biomedical Science Tower, which is connected to Montefiore by a pedestrian bridge (so 5 min walk). If you or your dad or mom ever need me to run over to help with anything or bring your dad something ("emergency" non-hospital treats or anything ;-) or just visit if he doesn't want to me alone, please don't hesitate to ask! My work is extremely flexible, so I can come and go as I please. Hugs, my thoughts are with you and your family.
always with the mystery illness. what a way to get attention. couldnt just get a cold like the rest of us , huh?
Hey there....man my brain powers are exhausted just trying to absorb all the medical info....tell Mr. Shoemaker I just know he made sure to bring this all on because he heard I might visit, and he didn't have enough verbal ammo to handle it. Yes, this seems like an extreme way to escape a visit of mine, but I put nothing past him. *wink* Alright, thanks again for posting Paige!
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