hi i'm sayuri, dxed a year and a half ago.this might be long. sorry in advance. i have a lot of questions and i feel my neurologist is too busy to worry with the likes of me. anyway my most severe issues latley, i feel like i'm emotionally mentally irrational,( took me about a full minute get that word out) i yelled at my best friend because she wanted to use my phone. i felt horrible after and just cried. i am very irritable with everyone. and im worried it will cause problems. i'm confused all the time, and i cant communicate how i feel or whats going on and it frusterates me even more. i feel like i am better at communicating via text messages but only a little bit. so when i fight with my boyfriend i text him even though we are in the same room. i don't think i'm making sense most of the time, i feel like someone is scratching my brain with a steel wool pad. i'm in a lot of pain and i feel like my depression has nose dived in the past week and its unbareable. i'm not suicidal, but i just don't have the patience to deal with anything. another problem is i cant handle filling out paper work, i just cant do it, my brain just stops. i cant concentrate. i can't stop crying. my food hurts it feels like i'm walking on a big rock so iv'e been walking on the side of my foot which in turn has made the side of my foot hurt. i get migraines a lot, my left leg hurts so bad its hard to walk even more so when my foot and leg hurt at the same time.i have really bad sleep paralysis (my brain wakes up but everything else stays asleep my eyes wont open, i stop breathing sometimes and i cant move anything) but it happens like 5 or 6 times a night, the worst time my boyfriend lost count, he was up for almost 3 hours because i have him help me move when it happens(it really freaks me out, my brain feels like its spinning and i cant relax i feel like if i do i will never be able to wake up fully)he said that my breathing gets quick then i just stop and i start shaking not a shiver shake but like a seizure kind of shake.i forget all the time, i forgot my dogs name the other day, iv'e had her for over 3 years and shes my baby so we are always together. how could i forget that. i also have a hard time believing myself, i wonder if my body is making symptoms up. i cant tell, i don't feel like anyone believes me i guess that would be because of some stupid remarks that i'm not tired i'm just lazy, or i'm just fat thats why my legs hurt. or everyone gets headaches and i'm psycho semantic. i feel like things are crawling all over me, my lips go numb a lot, i always drop things,my muscles especially my neck twitch all though out the day. not rapidly just every few minutes or so my leg with jump or my arms will jerk around, one time i actually slapped myself in the face, and while it was funny i was also scared. my neck is always "pulling" to the right. i get tired so easily, my eyesight is blurry fuzzy and sometimes fine well i need glasses but fine still. now i don't have insurance because my husband couldn't handle me having ms so he asked for a divorce so i lost that insurance. i cant get private insurance so now i m waiting and waiting and waiting for someone to get round to say ok yeah she can have state insurance. so i m doing a drug study for bg-12, so at least i can be seen by someone in the event of something really bad happening. and i get free mris. but i feel like he isn't giving me the time of day, i go into the drs office once a month, started off twice a month and in 6 months i have only seen him once. i usually spend my time with the study coordinator and i text her with any problems, but every time like with my muscles, neck, sleep paralysis , increasing depression and confusion with everything , just everything that doesn't feel right, he always without even talking to me says it's not ms related talk to your family dr. wtf! hes supposed to help me isn't he? i'm about to drop out of the study and take my chances with a huge medical bill and go to my friends wifes dr. i'm so sick of feeling this way, and most of all i cant stand not being able to communicate and tell my mom of bff or boyfriend how i feel or what feels wrong. i'm scared. i'm sorry this is so long its taking me long to try to get things out and i know i have forgotten some things, and i know this sounds like a woe is me post, but i'm really new to all this and haven't had much help by way of understanding whats going on so until i feel like i understand i don't think i will feel any different. oh yeah i forgot sometimes one side of my neck or the other will start burning then feel hot to the touch then it feels like someone is grabbing the muscle really hard, what is that? can anyone tell me what of whats going on with me is ms related and whats not? also my dr said that ms doesn't cause pain, how can that be?anyone that can actually get through this post i would be so greatfull for anything you can tell me. thanks and again sorry for the woe is me crap.
ps i often get very irritated and mad at myself, does this happen to anyone else? i feel stupid, i can't talk right.
also any advice for getting disability? my rx bill is over 300 a month and rising.
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