Selmahope wrote:Do you know how this is diagnosed ? Is it something a neuro can do or will know about? For food sensitivity testing I don't really test positive for anything.. however I know eating foods sometimes creates alot of throat clearing for me....... thx.
Diflican is not Porph safe. Neither is a low carb diet. Porphs need to eat high carb, low fat, bread, rice, potatoes, pasta, especially during acute attacks. Eat high carb every three hours, no additives, no colours, no preservatives. High sugar help attacks too.
Porphyria can be tested by urine, blood, faeces tests, but porphrins will only usually show up during the acute attack, also genetic testing follows from that. It's presumed to be rare so most doctors know little about it.
You sound just like my sister! We are trying to get a diagnosis now, but it's really difficult.
My last two attacks were set off by dental local anaesthetic injections.
Also can be triggered by the contraceptive pill (or hormone therapy), high iron levels in the body, heavy metals, drugs, or combinations of above and stress.
You may notice monthly cycle symptoms, getting worse in the luteal phase prior to menstruation.
None of us have tested positive to food allergys. It causes an intolerance rather than an allergy.
Worth a try to see if you feel better.
Read up on it and see if it fits.
All the best, I really feel for you, my last three years have been the pits!
My main trigger was the iron overload. The injections just tipped me over the edge.