question about CNS LUPUS

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johnny1959
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 6/21/2009 8:30 PM (GMT -7)   

Hi everyone

Is anyone in here suffering from CNS Lupus if so first of all I am so very sorry for you, but I just wanted to know what are your sings and systems? Because I have SLE Lupus for the last 5 years, and now I have been feeling pins and needles and like insects curling all over my bodying from the crown of my head to the soles of my feet for the last few months and off and on sweating on my chest and stomach, and also lately I’ve been having pain in my neck when I chew!!!

Is anyone or has anyone in here experienced these things?

 

Thanks and God bless

Johnny


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 6/21/2009 9:40 PM (GMT -7)   
I have had the crawlie feeling since before I was dx or tx. I have cns involvement but it is diffferent for everyone. I have memory issues worse than typical brain fog, periods where I am in the middle of a sentance stop for a minute or so then pick up where I left off, and other issues including migraine similar headaches that weren't migraines cause I have migraines and know them well. I also have weakness on my right side.
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


johnny1959
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 6/21/2009 10:19 PM (GMT -7)   
Wow i am so sorry to hear that you are suffering so much, this Lupus is realy something isen't it. how long have you had the CNS involvement and what meds helps you with that crawlie feeling because its driving me nuts!!!

Thanks and God bless
Johnny

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 6/22/2009 6:56 AM (GMT -7)   
Johnny,
I had Lupus Cerebritis a couple of years ago. I had some of the exact symptoms you're describing. I had the tingling sensation and the sensation of something crawling on me, especially on my face. Of course other symptoms developed. I had a spinal tap and ct with contrast to diagnose the prob. The treatment of was really high doses of steroids, YUCK! However, they helped quickly and I was also placed on Cellcept to improve cognitive function. God Bless you, Judy

johnny1959
New Member


Date Joined Nov 2008
Total Posts : 17
   Posted 6/22/2009 3:07 PM (GMT -7)   
God bless you to Judy and thank you so much for that great info. Wow this Lups is really something else isen't it.

Yours in Christ
Johnny
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