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Lupus Mom
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Hi everyone,
My Daughter Christy just got out of the hospital again. She had a Seizure the first one. She was on 40mg of steroids and had come down to 10mg by dropping 5mg a week she had just gone from 15mg to 10mg two days before the seizure and was feeling bad. They did a CT scan and EEG which was both normal. Her blood test where all good but the white and red blood cells which are always off. She will followup with her lupus doctor and neurologist doctor. My question is how do they diagnose CNS? would she have other symptoms ? Would a spinal tap be able to tell if she has it or not. She can not take Inuram because of her liver so she is just taking plaquinell and steroids ( she was going to the 10mg and stay there to help control the flares) pain medicine. She is very scared of having another seizure. This Seizure was the bad one that lasted 1 minute and she bite her tongue so bad that is still hurts also it took hours for her to remember everything. It seems like we get over one thing and something else happens. Also she is taking blood thinners for clots. I hope and pray this does not happen again and they can find out what caused it. Her boys age 8 and 11 where there talking to her when it happened and her husband was getting ready to go to work thank god he was still home. One good thing that came out of it is that her kids now no what to do if they are alone with her and they need to call 911 for help. By the way good news she did get her disability approved the first time it took 5 months. my prays are with you each Thanks Angie
 

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(((Angie)))

I cant help you with your question how they diagnosed CNS. Someone will come and post that knows.

I wanted to send you and your family big, soft, gentle hugs. I know how scary seizures can be. My handicapped daughter had grand mall seizures.
:grouphug2:
Lyn



 

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Dear Angie i know it must be hard for you as her mom, i started last year with CPS they scare me to, i have just had a neuro apointment, and am awaiting another mri scan then he wants me funded to go into somewhere for one to two weeks for eegs to be on me all time.

now like your daughter mine came back normal when i had one. as for cns she is already having as its got her with seizures, like me its attaking her brain, i to have been on high dose of steriods am now comming down to 10mg, but they put me from Azathioprine to Cellcept as they say its good for cns as well as the skin lupus

sorry thats about all i know, i forget thing to quick, with this lot as its effected my thinking writing long and short term mem probs me

i really hope thing go well for your daughter,once they get her meds right, like me seems to take for ever, butr i supose its not easy for the docs either hugs Lin xxxxxxxxxxxxx
 
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