This is going to be a messy sharepost- covering too wide a range possibly to be effective, but I'd really like to get it all off my chest and find some support. {{ In short tho- I've been seeking Medical help for 20++ years and am so frustrated with the poor care that I wonder if I shouldn't just accept my physical maladies and deal with them without meds, using alternative health care measures- No more doctors.) - except maybe my therapist* and psych. }} I have Dissociative Identity Disorder, and for many years my Life Was ThErapy- learning to form a 'system' inside that could manage today's world, while still integrating the past worlds. I made excellent progress, but because of my genetic connective tissue disorder, began even in my 20's to show signs of neurological decline- and my health began to fail I went from doctor to doctor, none of them believing me- until more exacting tests were done and I finally had to undergo open heart surgery because of my EDS- (connective tissue dis.) This, naturally interfered with my therapy. During that 20 year span I was told over and over that my neurological and pain issues were psychosomatic- and I - never really believed it deep down, but dealt with it as such, having nothing else to try- However, after my heart surgery, I lost my mobility almost completely, {because they didn't care for my neck the way a person with EDS required- my intermitant neurological problems took a landslide.} I couldn't control my left side and started having seizures and slowly lost my ability to walk. (They never acknowledged this- the specialists explained it to me later) After a videoed EEG in 2006, being told my seizures were psychogenic ( even though I'd never had any until after my heart surgery) I suffered a year- with seizures 3x's a day, being unable to move or speak for an hour following- I finally followed my own research and went to the Chiari Institute in NY. for help out of pure desperation. (That was across the continent-for me!) They diagnosed me esaily enough and all the neurological symptoms were part of rare conditions stemming from having EDS and the heart surgery. GRRRRR- sorry- but this is just some background info! My seizures came under contro - occurring just infrequently after going to TCI, due to the variables in brainstem compression- they became a daily thing again 6 months ago- this time being much more violent seizures, grand mal in appearance and character. (I'm declining because I haven't been able to get the surgeries recommended) Well, having state provided insurance in CA- it took me until just last week to get any help- I had another videoed EEG (the most hated, humiliating test you can imagine- hooked up with wires in my head and videoed 24 hours a day- ) Once they determined the seizures were not Epileptic, they sopped coming to help- ignored me, and only by the grace of God, my husband was there and I was able to tell him to request oygen- because it would bring me out of a seizure very quickly- (something the Neuros. ignored) They had the gall to tell me that my seizurese were psychogenic again. Even after admitting that they couldn't be sure of the oxygen level in the brain, and their lack of knowledge about my Tethered Cord- the severe spasming it can produce, and the passing out, gagging, throwing up ect, from Cranio-cervical Instability and Settling- and my 30 years in therapy- my psychiatrist's complete inability to help me- as well as my therapist's. The thing is, I had written and called beforehand, all my specialists, begging them to be availible to give the Neurologist input and hopefully expand their evaluation. I begged and called again, in the hospital- and even one of the Neuros called them- nONe of them were there for me. I offered to pay them- Being labled psychogenic sezures and having all my doctors let me down is just more than I can handle- It's a major trigger for me,..MaJoR. So, I started going off all my medications (slowly) but still- all of them- thinking (no more doctors for me!!!) And miraculously I haven't had but one mild seizure in a week now since being home- obviously the doctors didn't take side-effects, or interactions from medications into consideration at all. And it really makes me mad. Why do I always have to be the doctor??? I know i have rar disorders, but why are there nO doctors who really want to help, take the time to put a difficult puzzle together? They'd rather send me home having 3-6 grand mals a day with the guilt of some mental disorder causing it- than even look into possible drug interactions or alergic reactions! I'm disgusted with the medical system. And I know it's only going to get worse for people like me, living in poverty, with poor quality of life, (in their eyes) with any health care reform. I've already been told I can't have ANY rides to my doctor appointments without an attendant. (And believe me, there isn't anyBody to ask) And now all psych- related appointments are not provided for as well, even with an attendant. I have difficulties with the couple of family members who might be able to drive me, it's not worth the price- more costly in the end emotionally than is worth the bother. They are tired of me needing them, tired of me being sick- resentful. I am alone. I live in the forest with no neighbors and no TV and I can't walk further than 20 feet from the house. I despair of life, even without the seizures. It doesn't really matter- at least with the seizures I was unconscious for a good long while. I apologize for the length and the tenure of my post. I'm not in any danger, just terribly sad. I'm taking a small comfort in a new kitten I got just before going in the hospital last week and painting- My God, who hath brought me through many a storm will once again, hold me until the clouds part and the rainbow of promise shines again. From somewhere over, beneath, beyond- the rainbow