RE: cns involvement/blowing off steam

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lassy - 28 Jan 2004 23:16 GMT

Just got back from neuro recently. Said I have a complex partial
seizures disorder. My rhummey still says I don't have cns lupus, just
sle. Neuro did up my topamax dose to 125 mg twice a day. I use to get
debilitating headaches as well which I believe was from the Plaquenil I
was taking at the time. (They did find that I have two brain lesions.
that was a while back ago) I don't know a thing about the complex
seizers. I noticed that with the topamax when you adjust up you get
more confused until your body adjust to it and you do get some memory
loss. It does wonders for headaches tho. I don't understand why is it
so dang hard to get a diagnosis of cns lupus? Neuro asked me when I
walked in "So how many seizures have you had?" How the heck would I
know? I didn't know I had that condition until that visit. So now I am
suppose to write down when I have this type of seizure. How do I know
when I have a seizure? My bf is also suppose to write down when ever my
legs jerk in bed or when I shake in bed. I don't comprehend it all.
lupielassy in cali

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Dawn - 29 Jan 2004 06:03 GMT

I'd like to meet the people that do. I've tried to find concise info (you
know, we do confuse easily <g>) and I can't. I don't have seizures, but
have twitches in my hand/arms.
Sorry you have to go through such confusion, someone here might be able to
shed light. Keep your chin up.
Dawn Schmidt

> Just got back from neuro recently. Said I have a complex partial
> seizures disorder. My rhummey still says I don't have cns lupus, just
[quoted text clipped - 12 lines]
> legs jerk in bed or when I shake in bed. I don't comprehend it all.
> lupielassy in cali

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herbwormwood - 29 Jan 2004 11:48 GMT

> Just got back from neuro recently. Said I have a complex partial
> seizures disorder. My rhummey still says I don't have cns lupus, just
> sle. Neuro did up my topamax dose to 125 mg twice a day. I use to get

As far as I know, cns lupus can be a symtom of sle. Sle being systemic,
(the "s" part of sle) can affect *all body systems*. Surely your doc knows
this?
I cant answer the question about why it is so hard to diagnose, except
that I had a bucketload of procedures and tests before the neurologists
and rheumatologists were willing to say what it was, and they already knew
for certain I had Lupus, which I already had for the previous 15 years or
so.
I suppose it is partly because they cant see inside our brains the way
they can examine other organs, and the only standard effective treatments
are not to be taken lightly.
Let us know how you get on,
Lynne

> debilitating headaches as well which I believe was from the Plaquenil I
> was taking at the time. (They did find that I have two brain lesions.
[quoted text clipped - 9 lines]
> legs jerk in bed or when I shake in bed. I don't comprehend it all.
> lupielassy in cali

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Chaos Hill - 29 Jan 2004 15:03 GMT

Lassy I share your frustration with the dx - I have been dx's with SLE four
times in my life, (a fam doc, a neurologist, and another fam doc, then a
rheumatologist.......) the first three I ignored and the last I took
seriously - however the numerous doctors in bwetween and since still cannot
agree on a "label" and I just plod along.....

I hesitate - but here is a link for you to check out......... I swear there
is truth here and it works wonders for me.

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