Gwem Posted June 4, 2004 Report Share Posted June 4, 2004 hi,I just wanted to let everyone know the latest with my crazy health and dysautonomia.I have been tested for Porphyria TWICE...and have been to two seperate hemotologist and spoken with two seperate Porphyria specialists. Today it has been conculuded that i have a form of porphyria. Either Hereditary Porphyria or Variagate. I have to wait to have yet another test done to conclude which I do have. Has anyone else been diagnosed with porphyria or has anyone had the testing done? They said that it happens a lot in women and can be triggered by changes in estrogen levels. The hemotologist that diagnosed me today also said that I have to be careful of high fat and high concentrated sweets. He also said that there are TONS of medications that those with porphyria are allergic too...ESPCIALLY ANTI SPASMOTICS!! used to treat suspected Irritable Bowel Syndrom...i had been on three seperate ones and it made my symptoms (both gastrointestinal and neurological) MUCH worse... if anyone has had similar situations i suggest that you get tested and at least rule it in or out...I still have a long road to recovery and treatment I'm still in a daze about all this information i was thrown today. Any insight on similar situations with anyone would be great. And i hope that by me telling everyone that I do indeed have a form of porphyria...perhaps some of us can get some answers as to what triggered the dysautonomia symptoms. Quote Link to comment Share on other sites More sharing options...
geneva Posted June 4, 2004 Report Share Posted June 4, 2004 Gwem, I am glad to hear that you got some answers and perhaps a course of treatment that will help you improve. What is PORPHYRIA?? Quote Link to comment Share on other sites More sharing options...
Gwem Posted June 5, 2004 Author Report Share Posted June 5, 2004 Geneva,Here are some websites...Apparently I have either Heredetary or Variegate porphyria...both of which are Acute Porphyria forms. They effect the nervous system...here are some sites i found:www.porphyriafoundation.comhttp://www.porphyria-europe.com/EN/00-Info...question-02.asp Quote Link to comment Share on other sites More sharing options...
futurehope Posted June 5, 2004 Report Share Posted June 5, 2004 Gwem, Were you experiencing any symptoms suggestive of porphyria that steered your hematologist, or were you all just testing for everything and found out by accident? Quote Link to comment Share on other sites More sharing options...
Gwem Posted June 6, 2004 Author Report Share Posted June 6, 2004 COMPLETELY by accident, I went to a rheumotolgist because my electrophysiologist recommended i do so after i had the tilt table test and it was discovered i had dysautonomia. Ironically enough this rheumotologist thought it was "all in my head" even though i had written proof of dysautonomia. so he said he would run a few other tests and said that something called porphyria sounds kinda like the symptoms i got but, since he thought it was all in my head and compleely emotional...he doubted he'd find anything. HOWEVER, loand behold the test came back through the roof positive and thus i had to be retested.....i went to another doctor, a hemotologist who re-tested me and the numbers came up again! i then went to another hemotolgist that specializes in porphyria and he read the numbers and said that i definatly have an Acute form of porphyria and now it has to be determined which form. Thus explaining what triggered my vagus nerve to cause my dysautonomic symptoms...which if you read up on Actue porphyria affect the autonomic nervous system which are the exact things i have been complaining of. PLUS the medications that i've tried i've gotten WORSE not any better on....such as antispasmotics which people with porphyria CANNOT have! it explains why all the meds didn't work and made me worse! i now know which meds i can't have..the other thing is that i was on a Scopolamine patch prior to this diagnosis...it helped me a lot however whenever i ate my face would start to swell...an autonomic responce, well....this hemotologist looked up the drug on the list of unsafe drugs for poprhyria patients and it was listed as one of them, so it explained the "bizzar" autonomic respone i was getting. Quote Link to comment Share on other sites More sharing options...
DawnA Posted June 6, 2004 Report Share Posted June 6, 2004 Thanks for sharing this information with us. Will this go away? Or do they have a way to treat it. I am happy you found and answer and hope you are symptom free soon.Dawn Quote Link to comment Share on other sites More sharing options...
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