Thank you all for your responses and offers to help tackle the people who say "oh you look good!" LOL. I am sorry so many of you encountering rough times as well. My heart goes out to all of you who have kids or spouse's or others to look after on top of caring for yourselves which is a full-time job in itself. I love the support we give each other and the things we know we can ask with out worries. If anyone is interested I have started a blog on Yahoo 360 where I am trying to give information links. I am also working out a list of all meds that cause sun sensitivity and the chemicals that cause that as well. I do not know whether to start a webpage for that or not. But for now I will be posting it on my blog.
Oh some good news is that I have found a hematologist who will try to treat the Porphyria and Maybe look at the Sjogren's syndrome. He has not had many cases of treating porphyria patients but he has spoken to my primary care doctor, my rheumie whom recommended me to him. I am not able to see him until July 18th but he is familiar with all the chaos it took to get all of my diagnosis taken care of and treated. His nurse said he was willing to take me on as a patient if I could work with him as he is still figuring this out too. Of course, how could i say no? Will keep you posted
I hope you all feel better soon and thanks for the support.
I love you all,
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.
Post Edited (Leta) : 6/24/2007 1:24:21 AM (GMT-6)