There are two tests I was informed of when I finally found doctors willing to test me. The first test was to tell if I had porphyria. The second test was to tell which type. It took me months of pain induced seizures which landed me in a wheelchair (I was put on two medications when I was sick, obviously my body did not react well) to find someone to do the test. The first test came back positive. The second test came back negative. It had been months since the major triggers, I had been medicating through glucose to the degree of several IV's when necessary (as well as tablets, spray, karo syrup in water, etc) and was out of the wheelchair. Pain medications did nothing for the pain, only when I was hooked to an IV of glucose saline solution would I break out of the most difficult part of the attack. The lab which processed my results, as well as my GI physician, thought that the first test was so clear cut after the multiple tests for accuracy that I must have a form of porphyria. After many times testing since, I have yet to come up with the full diagnosis. I still am relying on the results of the first test, as well as when I treat it like it is AIP it is the only way I relieve any symptoms.
But I am still frequently sick. I'm worried about diabetes and other disorders if I need to have so much sugar to combat the porphyria. I don't have doctors who are willing to help me anymore, as they are trying to push me to others who don't know what to do. I realize the tests can be temperamental. I realize that I automatically reach for sugar and complex carbs to fight the attack myself so that it does not get worse. Should I just spark a reaction and risk spending the next few months in one of the scariest situations I've ever had to get a firm diagnosis?
Problem is that even if this is more likely to get a definitive diagnosis, it is not definitely going to get one. And though I am still experiencing difficulties, I don't know if they will be able to help me even if I get a firm diagnosis.
My family wants me to stop everything and get it over with, but they were not around when I was going through this. I may be one to yank bandaides off at once, but this is a whole other story. I fought this alone. It scared the hell out of me. But I don't know whether it makes sense to continue living with persistent issues if I'm not willing to at least give them what they need to figure out how to hypothetically help me - let alone actually do so.
Any advice is appreciated. It's a difficult thing to think of, but it's the furthest I've gotten. After over 15 years of searching (I'm 24 now, as you can imagine it has become most of what I know) I'm just not sure where to go anymore.
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