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.

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lupus cerebritis

deleted_user
deleted_user
Is there anyone out there whose lupus has affected the central nervous system?
It happened to me in 2004 which initially started with numbness in my legs. It was first thought that it may have been MS so I had a spinal tap done as well as an MRI. It was eventually decided on that it was the lupus. However during the determination process, I went through the ringer. Since my brain was inflamed, I developed both neurological and mental problems. I lost my memory for a whole month, I experienced bouts of bipolarism and during all this time I lost my home and my marriage. I ended up taking three different types of antipsychotic drugs, my prednisone intake got increased, I was put on Cytoxan treatments and I ended up on disability.
I'm doing much better now. I'm down to one antipsychotic drug now, I'm finished with my Cytoxan treatments and I'm in the process of weaning off the prednisone. However, I do suffer residual effects from this flare affecting my CNS. I experience neuropathy in my lower legs on a regular basis, and I know my mental capacities have become limited to a certain degree (I know I'm not the same person I was before this particular flare). So I'm just wondering if anyone has had a similar experience... I'm interested in your story.
keepingon
keepingon
Lyrica can really help the neuropathy pain and it has a large range starting at only 25 mgs and can go as high as 300. I had psychotic episodes before I was diagnosed, partly because I never slept, luckily my husband and 5 kids got me through it, along with going to sleep clinic, and a great doctor. Exercising your mind is the best way to get it back, crossword puzzles, reading, taking a class on line that requires research, anything that stimulates and makes you reach, other creative outlets like sewing , painting, writing (and proofing your writing), have all helped me. Finally or First start your day with scripture, meditation, some kind of devotional teaching and prayer.
deleted_user
deleted_user
hi! i developed seizures in the first few months after i was in hospital. and for a while they debated between cerebritis vs vasculitis. and because i don't have any other symptoms relayed to seizures, they decided on vasculitis. however, i have neuropathy in my right hand. i have pins and needles in my thumb and first 2 digits. i have no grip strength and when anything mildly sharp or pointy hits those digits it's pain!!! to makes matters worse i'm right handed but it's amazing what i can do with my left hand now. hope u are having better days!
deleted_user
deleted_user
hi, I was also on cytoxan treatment for 6 months because the lupus had affected my brain, memory and affecting my vision as well. I am very lucky to have had a good neurologist since his wife also had lupus. I was put on Keppra. During those chemo treatments I was on a wave of emotional roller coaster which I attribute to post-traumatic stress having to deal with my disability. My husband and I would have frequent arguments monthly but after my chemo, it had subsided. I wasn't put on any other drug except the Cellcept and Keppra afterwards, and weaned of Prednisone. I try not to "sweat the small stuff" and try to keep strong in the Faith, meditation, exercise, reading..whatever simple things in life to make myself happy and healthy. You just have to realize that the only person that can truly make yourself Happy is not your family or husband, but Yourself..
I've also read benefits of Vitamin B Complex and Omega 3 (cod liver oil) for your memory and brain function. You can either see a nutritionist or get a hold of the book "Maximum Energy or Age Reversal" by Dr. Ted Brouer available thru www.healthmasters.com
the Vitamin B Complex and Omega 3 also helps with depression. Yes you can go back to the person you once were...gradually. Keep your hopes up!
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