Hello Jenn and welcome to Neuro Talk, sorry about all you are going through, I have tried to find where you might want to post question on the porphryia, looks like neuropathy forum may be a start, hopefully someone else will have a suggestion.

I can however post a link for the Seizure forum, they may be a starting place for asking questions. Do not hesitate to ask around the forums, you will find folks here are helpful and kind.

here is the link for the epilepsy forum

http://neurotalk.psychcentral.com/forum11.html

here is the link for the main forum index, again welcome to NT

http://neurotalk.psychcentral.com/index.php