memory

[lupus girl]

for years ive had problems with my memory etc due to hydrocheplus (water on the brain) but recently i was asked about how i was coping with my memory etc.
i didnt tell the nurse how i have been at the last visit for blood check just kinda blamed it on the other condition i have. i know it was wrong of me to not be straight with her but i will be speaking with my doctor i see at the hospital when i next see him.
has anyone experienced brain involvement problems with lupus? how is it diagnosed ? what kind of things can be used to help ?
im going to find it hard being straight with my doctor about this but i know ive got to do it.
any information would be greatfully recieved

[rriffee@yahoo.com]

Hi Lupus girl: I also have memory problems and they gave me aricept(it's for Alzheimers disease) But it worked wonderful for me. There has been studies done on this drug for lupus and it has proven to help people. Good Luck Mary Jane

[jude mack]

Hi Lupus Girl

I have memory problems as well and have for years. I had allot of pshyc testing done and to tell the truth I don't remember all the tests I did have done, this was years ago. Since nothing was done about it, it is much worse now, I see a neuro in July for memory problems and numerous other things. Hopefully I will get help with it. I hope others will have some better answers as I could use some help myself. Mary Jane I think I will ask about Aricept, thank-you for the tip.

Stay Well
Jude style_emoticons/<#EMO_DIR#>/clover.gif

[alobreto]

I have some central nervous system involvement that presents as a full body intention tremor and intermittent thinking problems that increase when other symptoms flare. My balance is also affected.

The manifestations of brain involvement can be varied depending on what part of the brain is affected at the time. We are individual in how we each experience the disease. Bringing our lupus under control is the first and best step to take to get CNS symptoms to improve.

That means there is no easy answer to your question about how brain involvement can affect a person. It also means that what works in someone else's case may not be the right treatment in your case.

I think that's why we are so glad when we find a rheumatologist who understands US personally and OUR specific care. style_emoticons/<#EMO_DIR#>/smile.gif Lupus can be a very puzzling ailment to have! You are absolutely doing the right things to find out what is going on and how best to proceed.
Angela style_emoticons/<#EMO_DIR#>/flowers.gif

[Lily]

Hi lupus girl,

There are 19 different ways recognised by the ACR that Lupus can affect the central nervous system. There's a bit about that pinned at the top of the Symptoms forum:

http://www.thelupussite.com/forum/index.php?showtopic=20028

and it goes into much more detail here:

http://vamedres.com/Helpfuldocs/CNSlupusreview.pdf

And here's what Dr. Daniel Wallace has to say about it:

http://www.saclupus.org/Lupus%20Pamphlets/...US%20SYSTEM.htm (http://www.saclupus.org/Lupus%20Pamphlets/SYSTEMIC%20LUPUS%20AND%20THE%20NERVOUS%20SYSTEM.ht m)

Hope this helps and good luck, your Rheumy may refer you to a Neurologist who knows a bit about CNS Lupus.

I have CNS Lupus in the form of Vasculitis which these days is reasonably well controlled by Imuran. It's affected me in different ways and I also have a movement disorder called Dystonia. I have various other tremors that dont fit into that category, Depression, TIA's, Seizures, visual and auditory hallucinations, etc. All much better now my SLE is under more control. But if I dont take it easy, if I get sun or too much other UV exposure it all flares up again, despite being medicated. I've learnt to adapt around it as best I can.

As Angela said treatment is something thats tailored to the individuals needs as it can affect us in many different ways. Have they checked you for anticardiolipin antibodies and the lupus anticoagulant, thats a first step and an easy blood test with fairly straight forward treatment.

love
Lily

[lisade]

Hi Lupus Girl, Sorry you are having problems now.
I have CNS involvement that began with headaches and mild cognitive problems in Janurary I took a turn for the worse with facial neuropathy (left side of my face began to drop and I started drooling out the side of my mouth), left leg went numb and I had foot drop, terrible cognitive dysfunction and then began having little seizures. This is now all well controled with my meds and am doing much better.

The only advice I can add is be truthful with your doctor so that u can get adequate treatment.

Excellent articles Lilly thanks.

[hoperachel]

style_emoticons/<#EMO_DIR#>/Thanx.gif every one first of all for the replies. some of the information ive found really helpful. i
have mangaged to bring myself to chat to my mum about how things are. she says i will have to tell doctor when i see him at the hospital again.
on the lupus side of things theres been a few changes over this past year so the doctor could have some different ideas of what to do i guess i wont know till i ask. i hate being like this its not fair on them that have to look after me .

[Lily]

((((((((((((Rachel)))))))))))

Good luck with your appt at the hospital style_emoticons/<#EMO_DIR#>/hugbetter.gif It's important to be upfront with your doc about symptoms we are having, sometimes we hesitate because we often have so much going on. But 9 times out of ten they can help us, so dont hold back.

Yes I know sometimes we feel like a burden to our families and this whole disease can be incredibly frustrating for us style_emoticons/<#EMO_DIR#>/hugbetter.gif But know that your family loves you and that they do it because of that, to them its no burden (I'm speaking as a mother and a patient ) . To them you are precious and to us here also style_emoticons/<#EMO_DIR#>/tongue.gif so anytime you want to vent you go right ahead. There's not one of us here that hasnt felt like you do in your post today.

love
Lily

[alobreto]

Hi, Rachel! style_emoticons/<#EMO_DIR#>/wink.gif
I second Lily's sentiments. style_emoticons/<#EMO_DIR#>/wub.gif I also understand what you mean about feeling like it's your fault that your family is put in a position to provide assistance and care. I can tell you that I've felt the same way from time to time when things are not going well and my health is just in the rubbish pile.

Thank goodness that lupus changes so that it's likely that we won't be so ill all the time. And the more we tell our docs about how we're doing, the more able they are to help us to not need so much help from everyone else.

You go right ahead and vent! This is the best place to do that because we understand. style_emoticons/<#EMO_DIR#>/hugbetter.gif
Angela style_emoticons/<#EMO_DIR#>/flowers.gif