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Lupus with neuro complications
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Lupus with neuro complications

I was diagnosed 5 years ago with SLE. Since then I have moved on to neuro problems I became forgetful and could not find my car in parking lots. Could actually not remember what kind of car I was driving, what it looked like.I would forget where I was going on the way to run errands, I finally would write everything down. I began to have vision problems where I felt like i was looking out of other peoples glasses. My rhuematologist decided to send me to  a neurophychiatrist. After testing she suspected that I was having seizures and felt my Rhuemy should have me have a EEG. She also said I was not goofing off as he had seemed to think. I had a very bad tremor on the right side, and was very compromised in my short term memory. Rhuemy ordered EEG and discovered I was having partial complex siezures, I was hooked up with wonderful neurologist who did LP which was neg. At the time I was having siezures at least once a day sometimes more. Now I am on Topamx, 100 mg 3x daily, neurontin 100mg 4x daily, methatrexate 2.5mg. 5tabs Mon and Thurs
plaquenil 200mg 2x dly .125 levoxyl and 65mg armour for hypo thyroid.folic acid. and 2 .125mirapex in the afternoon and at bedtime. As needed Solumedral IV. My question is over the last two months I have lost 20 lbs and am feeling shakey (shaky) and out of breath, tremor is back and vertigo. my GP has done a complete check up and has ruled out cancer to her satisfaction. I returned to neuro and he reduced Topamax to 100mg 2x dly  and added Keppra 500mg 2x dly Keppra has knocked me for aloop Id appreciate a opinion on what to do next. thank you
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First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes. The symptoms and history that you have provided is concerning for a condition called Lupus Cerebritis.  Lupus is an auto-immune condition (your own immune cells attack your body) that can sometimes also attack the brain causing inflammation and dysfunction.  This dysfucntion can include neuro-psychiatric findings, focal seizures, ataxia (problems with balance) tremor, dementia (problems with thinking) and/or headache.  A diagnosis of Lupus Cerebritis is not often easy, but an MRI of the brain, and a PET scan (measures the brains metabolism of glucose) are helpful.  Inaddition a lumbar puncture needs to be done to evaluate for infections that can mimic Lupus Cerebritis, such as Toxoplasmosis (check with your neuro to see if they ordered Toxo test/infectious workup in your LP).  When a person already has altered mental status from brain inflammation, injury, infection etc. then the anti-epileptic drugs tend to have worse side effects.  Topamax can make you loose weight (although often a modest amount, which then stabilizes). Keppra is a drug that has few side effects, but the one most often reported is neuro-psychiatric (irritable, aggressive behavior, "makes me mean"), thus if your are already having problems with neuro-psych issuses presumably due to Lupus Cerebritis, then this may not be the best drug for you.  I would suggest a drug in the trileptal/tegretol family, which are good for complex partial seizures.  I would also add Klonipin (klonopin)(clonazepam), this would help with your tremor and help control your epilepsy.  You should also have a repeat EEG now and when you change medications to assess your epileptic activity (complex partial seizures can be subtle and might not be recognized without EEG).
I hope this has been helpful.
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