system
Suggest treatment for porphyria and its symptoms
human
i have a history of variegate porphyria and possibly coproporphyria in my family, as i am an illegitimate descendant of the house of windsor (british royal family), who are known carriers. i have been symptomatic since age 13, presenting with acute attack symptoms, food sensitivities that precipitate attacks, and presentations of delerium and confusion when exposed to sunlight, along with tissue necrosis and severe edema in the extremities on several occasions. over the years, my photosensitivity has worsened, to the point where it is now a full-blown neurological reaction that causes paralytic seizures that require medical attention. because of the severity of my light-sensitivity, my condition is now life-threatening. the shortest wavelengths of light i can tolerate are in the yellow-green to emerald green range, which is consistent with VP. any wavelength shorter than emerald green causes me immediate burning sensations in my skin, general nervous agitation and anxiety, and a hot, swelling sensation in my chest and abdominal cavity. exposure to any source of white light is in most cases immediately painful, and exposure for more than half hour causes cramping, writhing, and ultimately a grand-mal type seizure, with convulsions or paralysis. i spend most of my hours in a bedroom with a window covered enough to make it pitch black in the room with the lights turned off, and i only using a single green-colored cfl for lighting. lighting is controlled to varying degrees in other areas of the house. although i can obviously use a computer, i turn the brightness all the way down, but it still causes aching pain in my facial bones, eye pain and increased pussing, and facial redness and burning sensations. i have similar problems with the television. unfortunately, i have not been diagnosed. i did not know about photosensitivity diseases or my family history until my disease became very severe in 28, and the two tests i have undergone (once at age 30, again at age 39) were ordered by general physicians; both tests were botched. the first physician ordered the wrong series of tests (for erythropoietic rather than hepatic porphyrias), and the second physician excluded some tests that may have given a positive result (specific fluorescence test to confirm or rule out VP, possibly others). i spoke with a hematologist when i was not insured several years ago, and he gave me a runaround, telling me that diagnosis was unnecessary because there was nothing i could do about it but avoid sunlight, and that i should donate blood as a method of suppressing the attacks and porphyrin damage, which is contraindicated for VP and HCP. i have had great difficulty finding a specialist in my area that will take Medi-Cal (i live in redding, northern california). i am 41, and i know from my research that older sufferers often get false positives. can anyone recommend a qualified physician or hospital that will take my case either for medi-cal or as a charity case? i ve heard of a hospital back east (new york? pennsylvania?) that takes mystery disease charity cases on an inpatient basis for in-depth observation and testing. have any of you heard of this hospital, and would they take my case? for whatever reason, i cannot even establish myself as a patient with any general practitioners where i live, in redding, california. i have been turned away by all the local medical centers, although they accept medi-cal. when i was assessed for medi-cal, they sent me to a psychologist, who told them that without seeing any evidence of my claim (he was not given a copy of my medical files, which include photo documentation and witness references), that his uninformed opinion was that i was psychotic and delusional. i m guessing at this point that i am receiving medi-cal on the basis of his claims, as i did not receive any other assessment reports from my previous general practitioner (i recently moved, which is why i don t have a provider). it would appear to me that i am not being assisted because my illness has been falsely diagnosed as a delusion. is this a case of discrimination, and if so, what can i do about it? can anyone help me with this? with no diagnosis of my physiological condition and a false diagnosis of mental illness, i can t get SSI, i can t get an excuse note from a doctor to wear special protective clothing if i choose to seek employment, and if i seek medical attention for any number of health problems, the treatment could be potentially life-threatening because without a diagnosis of porphyria, they will give me whatever drugs they have on hand. i also fear that if i show up for an appointment at some new facility complaining of my porphyria-related symptoms that someone will have me committed for psychiatric evaluation due to whatever is stated in my medi-cal file. that in itself would be life-threatening, as i would surely experience a seizure from the light exposure and psychiatric drugs. what can i do to get out of this cycle of abuse? if necessary, i can sign release forms to forward my medical files from my former practitioner to anyone who responds. i desperately need someone to review my case.
gpt
i'm very sadly about what do you say.many times what we need is simply more time to spend taking care the other.but i think in this moment you need help, but the one can help you is a good neurologist. you should choose the one you think the best and give him all the documents he need to modified or "restart" the therapy.