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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/19/2010 7:57 AM (GMT -7)   
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


aimsgirl16
Forum Moderator


Date Joined Jun 2008
Total Posts : 1469
   Posted 3/19/2010 8:05 AM (GMT -7)   
Oh Sweetie! I am so sorry you are going through all this. I wish I could be there with you so you wouldnt feel so alone with this disease. Please let us know how everything goes for you Saturday. I will be praying for you and ramble on all you want. We are here to support you! I hope your days will get better soon!!!

Love you

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/20/2010 7:37 AM (GMT -7)   
(((( Redrose ))))) I am so sorry you are having a rough time right now. I pray the MRI will go well and reveal what is wrong, if anything. I've had several boughts of headaches/migraines that would not go away, it was terrible! Hang in there, lean on us and your husband! I know you don't want to put a lot on him, but he needs to know how you are feeling. Take care and know you will be in my prayers!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid and Tramadol (as needed) and magic mouthwash ( as needed for mouth sores)


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 3/21/2010 12:08 AM (GMT -7)   
I had my mri and mra today. I will get the results sometime this week.
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

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