I am still having cns issues. This saturday I will have an mri and mra of my brain. I will then schedule to see a neurologist to see if there are any ideas about what we can do beyond what we are already trying. I am very afraid of what they will find. the headache will not go away. I am having sleep disturbances as well, my husband thinks I sleep all day and am up all night. I am up most of the night but only sleep a few hours each day. I am having a nerve block done the 30th to help with my leg. I dropped all my classes and turned in the paperwork for a medical withdrawl. It will take a few weeks for it to be processed. I find myself unable to think straight and am afraid to drive the car. I can't even read the way I used to anymore. I have to re-read sentances several times to understand them. I am so afraid of losing myself to this disease. My brain is who I am and that is what is being attacked. How do I make my doctor understand that? He doesn't know me and I have only seen him twice. I see him again next month to check my progress but so what it doesn't change my fears. I don't want to be a burden but I am. I don't know what would happen to me if something happened to my husband. I find myself afraid because he keeps forgetting to take his blood pressure meds. Last night I told him if he loves me he will remember to take them, I know that is emotional blackmail and manipulative but darn it all it is how I feel because I know my family won't take care of me. They might worry a little when major stuff happens but for the most part all are relieved I am someone else's problem. I miss feeling confident and knowing what I am doing works and will make everything work out okay. This time around I worry about how much damage is being done. I already have weakness on my right side from the last cns flare what will it do this time? I haven't cooked lately either though I haven't explained to my husband my fears of leaving the stove on I just let him think I am being lazy and selfish. Plus we have a new stove and it intimidates me. It is so high tech and electronic and I find myself wondering how it works. I don't like worrying my husband so I keep this kind of stuff to myself. I know I shouldn't but he has so much on his plate right now and so many other things to worry about. Besides he is trying to learn windows 7 and helping this lady who is having major computer issues who can't afford a tech. I am rambling. I am sorry to come and dump all this here but figure at least one person here will understand what I am going through. I don't want to live if I lose myself, I am not suicidal or depressed just worried about what kind of life I will have left if I lose my mind to cns issues.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence