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red246
01-11-2012, 12:58 PM
Went back to rheumy today and found out due to nervous system issues I've been having that I get to go back to the neurologist. She is calling insurance company to go ahead and get authorization for new MRI that way I can go armed to the Neuro! She said that if we can "document" that the Lupus is affecting my nervous system then it's time to bring out the "Big Guns" as far as meds are concerned. Oh Joy! I didn't even bother to ask what that means, cuz I know it doesn't matter at this point. I've taken the "Little Guns" and they don't do anything or I'm allergic to them! I really don't think I'm a candidate for Benlysta either, since all the literature I've read about it says that since it hasn't been really researched for "brain" issues they don't recommend it.

I guess long story short, I get to go see if I have holes in my brain since I did discover a few years ago that Yes, I do actually have one! lol

tgal
01-11-2012, 02:48 PM
Went back to rheumy today and found out due to nervous system issues I've been having that I get to go back to the neurologist. She is calling insurance company to go ahead and get authorization for new MRI that way I can go armed to the Neuro! She said that if we can "document" that the Lupus is affecting my nervous system then it's time to bring out the "Big Guns" as far as meds are concerned. Oh Joy! I didn't even bother to ask what that means, cuz I know it doesn't matter at this point. I've taken the "Little Guns" and they don't do anything or I'm allergic to them! I really don't think I'm a candidate for Benlysta either, since all the literature I've read about it says that since it hasn't been really researched for "brain" issues they don't recommend it.

I guess long story short, I get to go see if I have holes in my brain since I did discover a few years ago that Yes, I do actually have one! lol

Sorry about the problems but I am really glad that you have a rhuemy that is on top of everything! Let us know how the tests come out. Thinking of you always

kim,l
01-11-2012, 04:29 PM
goodluck on your doctors appointment and keep us informed will be thinking of you hugs

steve.b
01-11-2012, 06:59 PM
it is hard to understand what our system does.
but i hope the doctors sort it out for you.

wishing good thoughts for you

red246
01-11-2012, 07:26 PM
Thank you! I know I'm lucky that I'm not having major seizures or that I'm not forgetting where I am while driving - but I don't want it to get to that point! I already try to limit my driving so that I don't risk it - kids get upset when we're supposed to go somewhere and can't cause I don't feel up to driving, but they're trying to understand.
Okay, brain fog, completely lost where I was going! LOL If I remember, I'll come back and finish. ***GRIN***

magistramarla
01-11-2012, 10:53 PM
Hi Red,
Good luck with the neurologist. I just had a scary drive home from my gourmet club dinner. My right foot is so numb, I mostly can't feel it pushing down on the accelerator and brake. I also noticed something tonight. I think that I'm having problems feeling where my foot is in space. The brake pedal is bigger, so it's easier for my foot to find. I keep missing the accelerator, or I just barely touch it, and my foot slips off. I've had to severely limit how far I can drive, and I try to take back roads without a lot of traffic or stoplights. Stoplights are the worst - my leg starts to spasm if I'm pressing on the brake for very long.
I'll be curious to know what your neuro tells you.
Hugs,
Marla