wots the differance from SLE and Cerebral lupus.???

[mojo]

[Lupoid]

Systemic Lupus can affect all the organs , whereas cerebral lupus is the name to lupus that specifically/predominantly affects the brain/nerves/etc...

(although I'm not a doctor)

[mojo in reply to Lupoid]

Thank you very much, it good to know all these thing , iam quite ignorant to my own illness so am just making myself more aware too, thats wot i like about this site. .Mo.

[LorraineE]

I have this type of lupus and I am told that it's lupus that mainly affects the brain. Hope this helps Lx

[mojo in reply to LorraineE]

Thank you very much, its just that i dont remember ever hearing about it, prob been made aware but wasnt realy sure, may i ask in wot way does it affect you if its not too personal thanx. Mo. x

[LorraineE in reply to mojo]

My damage is mainly residual damage from before my diagnosis. I walk with a waking stick and self-catherise daily and as far as I am told it is the blood vessels in my brain that are inflamed and leaking I think red blood cells. I have a major lack of energy. How are you? Lx

[mojo]

My main problems are with all my joints and mucles from head to toe, but resently, the extreme fatigue and at times dont have any energy at all i feel so week at times, this is wot realy gets mr down, the pain is something i hav learned to live with but iam realy struggling with the tiredness and being so week, av just been diagnosed with ashma too prob not connected but things just seem to be geting worse and nothing is helping at this time, But need to try n keep positive as best i can and i think this site will help me to, . Mo. x

[irenestephen]

Hi

Lupus as you know is a multi faseted illness that covers a wide spectrum of different symptoms but sometimes it can predominately target one organ above all others. (Can you tell that came from a book?)

In my case the brain. My memory (I have post its everywhere). I try using tricks to cover up my mistakes and things that I forget - e.g. let the person speak about things before me so I can try to relate the subject to this person (even have to do this with my daughter and sons on the phone - depending on what subject or work they are talking about then I know who they are) I try

and use cognitive approaches to things - e.g. I cannot remember the year I had my hysterectomy but I know it was the year that Nelson Mandela was released because it was on the news when I was recovering! I cannot carry things up stairs as I 'forget' that I am carrying stuff and walking upstairs at the same time so I either trip up or drop things or both. My balance is not very good - I walk with 2 crutches to try and help (which is okay until you trip over them!) and if I have to sit on a chair with no arms then I slowly start slipping over to one side and fall off! I cannot cook if anyone is not in the house to check that I have turned things on/off properly. I have been known to hand people pizza straight on to the tray and then ask them if they wanted spaggetti on top! The things that turn up in various parts of the house is unbeleivable. If anyone needs anything to keep for them then I am the lady to ask but just don't ask for it back as I will not remember where I put it!!!!!!!!!!!!!!!!!!.

You have no idea how upsetting it is to forget your own son's name when he came in to visit me in hospital

I sometimes forget to swallow - I can be walking about the house and suddenly realise I still have food to swallow - and sometimes when things are really flared up I have even forgotten how to swallow and I can assure you a nose feed line is not pleasant!!!!!!!

This has also caused me to develop epilepsy and this scares the life out of me

When you are pregnant you hear tales of how long their labour was well it seems to be the same with epilepsy!!!!!!!!!!!!!

Of course I also have the usual things to cope with the lupus as well. The tiredness - tired of being tired (if that makes sense) the aches and pains and over the past 3 or 4 years the lupus attacking other organs.

I sound like a real misery guts but I'm not honestly. I am two people really - the one other people see and the one inside which is crying out for some help and relief but I have come to the conclusion that that is the way many of us 'lupies' are and it is the only way to cope.

Take care - Irene