My name is Raquel Santiago, i am presdient of Disabled Students Association at San Francisco State University, when i was 16 i had my first seizure and was subsequently dx's with epilepsy at 17. Five years ago i was also dx's with Fibromyalgia and COPD, so i pretty much have 3 verified diseases ruining my life. I average about 1 seizure a week but sometimes can go months without one. Recently i have had three ER Visits for dilantin toxicity and had to be pulled off of it by my new neurologist Dr. King-Stephens who is supposedly the best in the field. He pulled me off the dilantin but kept me on 3000 MG per day of Keppra 1500 in AM and 1500 in PM and 250 mg Lamictral n am and 250 in PM. But he also had me admitted to hospital for an EEG. I was admitted on Tuesday July 12th and now its Monday July 19th. While i have been her he has had me do sleep deprivation and has taken me off all anti-seizure drugs yet i have had no seizures while i have been here. Only yesterday did all seizure meds stop totally. This morning we had a conversation where i wanted to go home since i have not been allowed to leave my room at all while this is going on, and he told me that if i dont have a seizure by wednesday then i can go home and that there is only a 2 percent chane that i actually do epilepsy since i havent had a seizure during this time and that if my seizures are stress induced its not epilepsy and that i should see a psychiatrist about stress reduction.
Here is where my anger kicks in, my entire life i have had seizures and now just because i dont have one at his beck and call he is going to throw out there that i dont have epilepsy lwhere other witnessed have outright told me i had grand mal seizures. I cannot in good faith go on just his word and this one instance of no seizures that i dont have epilepsy, i would go back to my old neurologist Dr. Jay at San Francisco General if that ER doctor had not tried to kill me. I went to their ER last month and was told my dilantin level was 00 when in actuality it was 55 and they gave me a boost of another 500 MG so they discharged me in good health and i could barely walk or talk, it took 6 police officers to get me back home and next morning my IHSS Care Provider called an ambulance and i was brought here to California Pacific Medical Center where i was admitted for dilantin toxicity of 65 and almost died. I was then discharged from CPMC a few days after that and readmitted a week later for dilantin Toxicity again but lower this time as in its low 30's but still high enough to cause me problems. So today i have started documenting what is going on whenever i have a spasm that cannot be controlled and have asked for letters from all witness to talk to Dr. King-Stepehns and if that doesnt work and he tries to take me off any of my anti-seziure drugs i will fire him and find a neurologist that i can work with. I wonder if its because i am Transgender, Male to Female that he is doing this i dont know but all i know is that i am very sick and that over the years it has gotten wose i dread turning 30 lol because i feel like i am just getting worse and i feel that something is eating me from the inside out and if something isnt done and soon then i will make my own choice of how and IF to continue living this life which totally frigging sucks.