I am sorry you are having a rough time with all of this. I know i went through 3 years before they would finally test for Porphyria and now that they have there is no question that I have the disease. Did they run the test for you? Also if the redness is not there when you go in make sure to take pictures so they can see how bad it gets for you. Also a dermatologist may be another route to try to help you as well. Keep us informed and still stay out of the sun as much as possible. Also keep a journal of all you do daily, nap, pain levels and which body part, eating, every time you throw up, etc.
sle 99 w/cns & autonomic involvement 11/05, photosensitive 04/04, sjogren's syndrome 99, ra 99, fibromyalgia 8/05, sinus tachycardia 6/04, asthma 96, allergies to artificial dyes, sulfa, penicillin, cephalosporin 06/04, idiopathic neuropathy/neuro pain 11/05. Epilepsy 3/06, prob mini-stroke 5/06, Porphyria 5/06, Vitamin D deficiency severe 4/07. Meds are baclofen 40 mg, prenatal tabs, calcium, potassium, vit D prescript
ion 50,000 iu, qvar, albuteral, singulair, plaquenil 400 mg, tramadol 400 mg, darvecet 100 mg, artificial tears, stuff for the sjogrens.