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amy1226 posted:
Hi, I'm Amy and I'm 51. I was diagnosed with SLE about 10 years ago, although I was sick my whole life I had never even heard of SLE. I went thru a bit of remission for about 6 months then my whole world imploded. I've had 2 strokes from lupus vasculitis, lost my left kidney, then diagnosed with mixed connective tissue disorder, shogrens syndrome and raynaud pheno. In September I was hosp for massive blood clots (PE's) in both lungs but I wasn't short of breath and had no pain taking deep breaths. My husband forced me to go to ER cause my skin looked grayish and my lips were white. I felt fine. The doc said I would have died before the day ended if I hadn't gone to ER. And now I'm going insane! I can't finish sentences cause I can't keep my thoughts straight. I feel like I'm in this like fog. I can't remember things. I feel such sadness and anxiety and it's like I can't move. I think I might be depressed but right now I don't feel anything. Like endless disconnect. Im happily married 30 years now, I've got a wonderful son, daughter-in-law beautiful grandchildren. I don't have to work, we have no financial worries there is no reason for what is happening to my brain. Ive never been like this, Im very organized, my house is just a nightmare cause I start stuff then I forget what Im doing. My question is could this be SLE causing me to go insane? Should I go to the ER for mental illness? Im afraid to go there they will lock me up I know Im babbling now. Im not stupid, I have 2 master degrees and graduated college suma. Has anyone heard of SLE patients going insane?
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nancyj95 responded:
You aren't going crazy. The "fog" is definitely a lupus symptom, though I have friends with other autoimmune issues with the same fog. You should speak with your rheumatologist about this and I am sure there are things which can be done to help you out of the deep depression you also seem to have. You must be honest with your doctors and perhaps keeping a journal of the problems would help explain it to them more clearly. I have been blessed to not have a serious case of "fog" and although my SLE has never gone to remission, it is under control. I, too have other autoimmune issues and having more than one DX is very common among us.
See someone soon about your issues. Talking about them is definitely a help. We here are here for you, but maybe there is a support group near you which would be another way to help yourself. You are not crazy!!!
 
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amy1226 replied to nancyj95's response:
Thank you. I did call my rheumatologist right after I send the sos to this site. I went in right away and he sent me to a neurosurgeon had ct scan with dye and a pet scan. He had all my ct's sent for comparison. still more tests, blood work not back but he is certain that I have central nervous system lupus, something called and im not spelling this right antiphospholipd syndrome cause of thrombolic events causing my pulmpnary embolisms we thought were cause by DVT. my husband says to tell you organic brain syndrome, vasculitis insult. the scans showed brain lesions and inflamation in my brain tissue. those scans found blood clots in my sinus cavities. im in hosp for clots but now its really hard to talk. were told this is a catastropic syndrome but the can help me. they dont explain nothing and I dont know what this means. i think theyre wrong. i thought lupus affect the body and not brain. has anybody heard of this
 
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lupylisa44 replied to amy1226's response:
Yes, lupus can involve the brain and central nervous system! I know several lupies who haved this type of involvement. Here are some links to shed some light on it for you:

http://emedicine.medscape.com/article/1146456-overview

https://www.dana.org/news/brainhealth/detail.aspx?id=9888

http://www.lupusny.org/about-lupus/newsletters/may-june-2006/can-lupus-affect-my-brain

http://www.lupus.org/answers/entry/lupus-and-the-nervous-system
With love, with patience and with faith, we'll make our way.
 
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marcie1170 responded:
Omg, i am so sorry you are going through this. I have similar or had similar things going on,but a friend of mine almost died in the e.r.,but she did have pain because she had so much fluid build up around her lungs and heart,it was squeezing her heart to the point of her screaming in pain(of course,e.r. docs not putting 2 2together)until a nurse realized what could be happening and got another doc. they had to immediately stick a needle through her chest and relieve her. they said she was minutes from death,if that. as far as the mental part...that is one of the MOST COMMON side effects!!!! my family had a mini intervention with me last year. there are various ways it can affect your brain and some show on mri. extremely low vit b12 is one,too...also,inflammation to where tissue dies off,but theres other things,too. go see a neurologist and get blood and mri!
Marcie-Moo
 
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marcie1170 replied to marcie1170's response:
sorry,i see you have updated since!
Marcie-Moo
 
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nancyj95 replied to amy1226's response:
Lupus can affect ALL parts of the body. Just because for most it is joints, dermatologic or kidneys don't just assume it can't be part of the lupus. I had I don't know how many procedures including gall bladder removal for elevated liver enzymes (for years) until after my lupus was diagnosed, which wasn't until I was in my 50's. Then my gastroenterologist insisted on a liver biopsy only to find I have autoimmune hepatitis. Now I see a liver specialist regularly and we have it under control. You must listen to you body and ask for help. Your doc sounds good, so be honest with him and they will see you through this. What you have is more common than you think-you just don't hear about it as often.
Amy, you'll be in my prayers. You will get through this!


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