For YEARS to many drs with same symptoms you mention, and more.
I was the one who came up with porphyria, after having gall bladder removed and yet severe abdominal pain still remaining, then being in hospital for 3 weeks with this severe abdominal pain which got ignored because I had end stage cirhhosis at that point! ( this was when was being treated as chronic fatigue with high dose Diflucan for a year--totally messed my liver up--yes, I also can't deal with antibiotics, esp sulphur etc--caused a real problem when hospital gave me an infection!). While in hospital millions of tests to determine what might be underlying cause, but all centered on liver diseases. No final outcome, except severely compromised liver.
Few years later, again the severe abdominal pain--again to liver specialist, Definitley not liver, then to GI dr, not sure what, again millions of test. Then to my general dr-who I approached (after much research)with thought of porphyria.
We tested a # of times, but is difficult to test for--one part of test showed postitive, second part did not. Dr now suspects I have it, but you have to be in the midst of the attack for your urine to show it.
Definitely the history there thru full family.
But did also test for related (or actually same?--just is term used by the alternative doctors) again at my instigation, not doctors, pyrroluria--and was postitive!
Need high-dose Vitamin B6 and zinc to correct--correction works to some degree.
http://www.nutritional-healing.com.au/c ... =Pyroluria
(the Bio center in Wichita Ka is considered best--I use them--but you have to off all supplments for at least 2 weeks I think --which they forget to tell you!)
I have lots more info--am amazed to find someone here with similar problems--if want to discuss further, PM me.
I have been diagnosed as MS by neurological opthalmologist because of history, and optic neuritis, and MRI brain lesions.
Neurologist says possible MS, but also looks like vascular problem.
ADDENDUM: 1/23/10 Just found this extremely interesting take on MS --the author links MS to Porphyria, defect in heme synthesis! Have never elsewhere seen anything on this to link the two, but my history certainly would seem to: http://www.drgeorgepc.com/MEDMultipleSclerosis.html
LOL further addendum: just found this link http://users.stargate.net/~rnr/
which appears to be the original research -- looks like dr george pc "stole" it verbatim!