long time no see
AnonymousMarch 23, 2012 at 4:41 am
I havent posted here for about two years. I thought for sure that I had CIDP because I kept having some acute bouts of a GBS like presentation. I was diagnosed with GBS in 2002 and after 7 years of relapses including a bout of transverse myelitis I found out that I never had GBS. That GBS does not last only 2 weeks because when the myeline is damaged it takes much longer to recover. I had AMAN. I had P.E in 2002 and 2009. both times it was highly effective. two years ago I found the link between the rampent schizophrenia in my family and guillian barre like illness and it was a genetic disorder called acute intermittent porphyria. It turns out I was correct. I have porphyria and knowing this made all the difference because it allowed me to understnad that my symptoms were not caused by some silly BS lie that my immune system became confused and accidentally attacked me. I found out that it is my liver that is flawed that. Inside my hepatic cells I have these things called cytochrome p450s and they have a heme cofactor and this heme cofactor has eight steps in its synthetic pathway and each step must be catalyzed by a certain enzyme and I do not make enough of the enzyme which catalyzes the 3rd step. sometimes the unincorporated heme product spills out into the body and can cause imbalances in infinite combinations. Now here is where it gets crazy I need cyp450s to make vitamin D, cortisol and other steroid hormones. If I cannot make cortisol and cortisol prohibits the proliferation of T cells then how can I do this with out cortisol. In fact everytime my immune system responds to something whether it is a chemical, an alergen or a pathogen I need this cyp450 action. This is what is called my Xenobiotic metabolism that is how I clear things in my body that dont normally belong. So knowing this made all the difference because I found out that I had to keep my system as stable as possible and not expose myself to anything that might overwhelm it or else I may over whelm the enzyme deficiency and have another attack. If you are like me as there were others like me when I used to post, that are undiagnosed and have acute bouts of guillian barre like presentation, then their might be another path to solving your health problems. just a thought
March 30, 2012 at 2:41 am
wow! thanks for the update!!! I have heard about porphyria.. do you get a lot of pain, or the purple urine?? (if you don’t mind me asking!:) Do you still have to do PE or is there an easier/less invasive treatment? Glad to hear you found an answer, and I hope you are doing well! thanks again for updating us!!!
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