Thanks Leta, I went to the site last time and I saw the list but didn't think to look up the soma on it. Thanks again for helping me. I looked at some of the stuff, most of my regulars are ok. I will definitely push my rheumie to test me and if he won't, I will beg the hepatologist to. What is really the best definitive test. Bloodwork? or 24 urine? It would be good to know what the best test is so I can get the right test and not just some halfway inconclusive waste of money thing. I also have a hx of hemochromatosis and probably still have high ferritin, they stopped checking it because it was always high. Heaven forbid they treat it. Liver pain. Nausea and hep like feeling, severe fatigue, burning of skin when out in sun, even if the skin is covered sometimes. Loss of pigment and hyperpigmented spots, Addisons like hyperpigmentation, kidney pain, chronic bladder pain, no rash, but some acne like stuff forms around my mouth that is like pimples with no heads that turn into scabs and sometimes scar. Red face and difficultie cooling down and slowing heart rate, dizziness and loss of vision in a way, like I lose color and focus and frequently have to blink and blink and try to get refocused. I haven't got an itchy rash, but the pix of some of the milder skin stuff looks like areas of my vitiligo dotted with hyperpigmentation. Also, these areas get cold and blue sometimes, as if they are dying or breaking down and I have neuropathy in these areas. The liver pain and fatigue was most noticeable and the beginning of my sun problems corresponds with the second month of taking the somas every night, which is when a drug usually builds up in my system. I got wood blinds on sale at home depot for 21.00 a piece, no matter the size, so I got a real good deal and I put them up where I could and they block the light well and look good. I've also had an increase in joint pain bad in big toe and thumbs and neck stiff and almost a fever feeling and headache, but temp is low by one or two degrees--probably due to my thyroid. And, of course, the nausea and some diarrhea/gi pain. I read that it is very common after hepc infection and hemochromatosis, both of which I had, and involves fatty liver and I have severe fatty liver, every cell is as fatty as it can be, and so this would be a no brainer to test for. I guess they expected me to bring up sun sensitivity or thought my skin symptoms looked too mild. Is it important to get tested while the porphyria is flaring? If so, I need to go ASAP because it is getting better.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments