Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

912 Members

7,373 Posts

0 Online

bny806 04/18/2016

Hello, I am wondering if anyone else has CNS lupus and has similar Sx:

I get these really weird headaches, buzzing in my head.. I feel disoriented and can't think straight, slurred speech and can't walk right.. all of my limbs are tingly and I get butter fingers.. it's awful!!!!! I have wondered if it was cerebritis or my brain swelling!!! My vision changes as well.. it's just so hard to function.. usually it will last for days, if not a few weeks with pretty bad headaches.. and then resolve for a while and happen again.

I am in the middle of this now.. I started with a flare of all symptoms about 1 week ago - mouth ulcers, vasculitis pain on my arm, rash, joint pains.. this steps it up to another level, and of course insane fatigue.

thanks

nanny1611 04/18/2016

Yes, I've battled eye, ear, and brain issues several times. During the worst episode, my vision keep going gray and got very light. I worried about going blind. During the same time, my ears started ringing much more loudly than usual. And at one point, I couldn't hear out of one of my ears. And while the eyes and ears were affected, my brain was so bad that I thought it was the early stages of dementia. It was very scary. My headaches were minimal, however. I battled through it with supplements and then saw the doctor. She told me never to wait again, because blindness, deafness, and brain issues could result.

As for the balance issues, I experience those a lot, probably because of the muscle damage done from myositis. So I can't completely blame lupus. Best wishes to you.

theashness 04/23/2016

I've had some of this as well. It does feel like something is buzzing in my head and it's very disorienting. I feel dizzy as well and it's hard to concentrate. I don't have some of the other things you described but i do experience that! I have UCTD/Lupus presentation.

Misty2159 04/27/2016

Sorry that you are having a hard time . There are times that we just don,t think there will be any good days . I know how you feel ... I have had lupus for over 35 years . Hugs

bny806 05/03/2016

Thank y'all.. ugh.. so miserable!!!! Once I did my IVIG it took it away.. I made sure to take my baby aspirin as well.. so so awful feeling that way, and scary!!!

Thanks for y'alls support!

Join the Conversation