confusion and then some

A forum to talk about the general challenges of daily life with MS.

confusion and then some

Postby sayuri » Mon Jun 23, 2008 12:22 am

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.

sayuri
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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sayuri
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Postby cheerleader » Mon Jun 23, 2008 8:26 am

Sayuri...
I'm so sorry you are feeling such a huge wave of pain and desperation. Yes, you are right- MS causes physical pain. You can have muscle spasms as well as neuropathic pain...which is exactly what you described. It can also affect your breathing and sleeping cycles. It all depends on where your lesions are in your brain. Everything you describe is related to your MS...even your emotional feelings.

I'm especially sorry you feel so alone. Is there an MS support group in your neighborhood? Here's the link to the Indiana Chapter of the MS Society. Look for folks to talk to. Maybe they have a suggestion for a better doctor, someone who understands MS.
http://ini.nationalmssociety.org/site/P ... I_homepage

Also, here's a link to a prescription program which will help pay for your meds, since you don't have any insurance:
The Partnership for Prescription Assistance
https://www.pparx.org/Intro.php

I'm not sure about disability, since my husband hasn't needed that assistance, but maybe others will pipe in with help on that.

You say that texting is easier than talking right now, so keep writing.
Wishing you a peaceful heart and a painfree body-
AC
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby sayuri » Mon Jun 23, 2008 12:49 pm

thank you so much cheerleader. i'm definitely going to look into all of that! i don't understand why my dr would lie to me and not give me some time and help me. I haven't felt like hes is helping me for a while though. my boyfriend hates him and cant cant go to my appointments because he wants to tell him off. so i just leave him home now.and pretty much everything i listed i have told them about and they say none of it is ms related . so i went to my family dr and she did the best she could but not really helpful. just gave me more gabapentin. and as for disability i need to get it to help, i'm going to work part time as much as i can.i feel that if my sister can get disability because she has a drug problem then they should help me too. and about the pain, can they give me anything, they keep telling me tylenol, but it doesn't help. and the gabapentin i feel only works at helping calm down the sleep issues and sometimes when i turn my head it feels like my brain and vision and everything has to catch up with the turn, doe that make sense? its a little dizzying. also has anyone had this issue? i'm nauseous all the time, not horribly so but just a nagging feeling in the back of my throat and in my stomach. but when i get in most cars it gets much much worse. is it motion sickness? why is it only in some cars, and my friend shana's car its the worst so i cant get in her car anymore. im fine in my moms car, and one of my boyfriends cars but only that one.
thanks for all your help again. and thinks for any further help as well
:?
Do you think she's talented? Deeply and importantly talented?
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Postby VodooDoll » Tue Jul 15, 2008 12:22 pm

Hi Sayuri,

I know how you feel! Been there done that, bought a T-shirt. It's hard when you talk and the people you THINK should care- just look at you like a deer in the headlights.

Sorry to hear you have such a crappy Dr. and in my opinion- that Dr. IS the problem! Call your local MS soceity, tell them about you finanical situation and find out who they recomend.

Once you get a good Dr. he/she can advise you on drugs and disability.
But alot of information gathering you will need to do on your own.

Hope this helps
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Postby catfreak » Wed Jul 16, 2008 5:18 pm

Hi Sayuri!

I am with you on all these things. I told my doctor that I was not a threat to myself but I was definitly a threat to others. I feel like I need anger management. I feel stupid, tired, lazy, crazy... the list could go on and on.

hang in there.

CF
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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