I am sorry that your having many health problems. Your porphyria may be causing some of your motor symptoms, but usually it does not cause sensory changes (paraesthesias) as the dominant feature. Sensory problems can be caused by a great many disorders and I would check with your neurologist. So your fasciculations might be due, in part to yoiur porphyria. There is a condition known as late-like migrainous equivalents or migraine aura without headache. You are alittle young for this, but it can happen in your age group. However, one must rule out things like epilepsy, thrombocytopenia, hyperviscosity sydrome and antiphospholipid antibody syndrome before one feels comfortable with this diagnosis. Once these things have been ruled out, then the diagnosis can be made. There are usually no permanent sequelae with this syndrome. However, I would first get checked for the other mentioned conditions before feeling like this is your diagnosis. Let us know how you do.
CCF Neuro MD