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lupus cerbritis



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12/27/2007 19:04
chronicchick
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DOes anyone have lupus cerebritis? and do you know anything about it?

I have issues with with the swelling. My nerologist upped my dose of predisone.

I have issues with my speech, I go to say one word and another word cames out.

http://chronic-chick.blogspot.com/

My living with lupus blog.

www.chronicchicktalk.com
My website (still in progress)
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12/31/2007 14:36
mumeva
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I have Central Nervous System Lupus which causes, severe headaches, dizziness-lack of concentration-fogginess in the head and its all on the right side of my head and actually makes my ear hurt as well. I also had a brain hemrraghe on the right side in August and the neurologist says it was due to the lupus but they didn't call it cerebritis. I too was put on a very high dose of prednisone for awhile and right now I'm down on the prednisone. I also have trouble with my thoughts and still cannot read as I can't comprehend very well this was all since my hemrrghe. Wishing you all the best.

Eva


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12/31/2007 18:51
chronicchick
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Ya the concentrations issues drive me crazy or forgetting things allll the time. i do still like my reading. i too had a stroke from the lupus.

and the crazy words that come out of my moouth.

Ive been on farm aniamls for a while (must have lived on a farm in annother life )

http://chronic-chick.blogspot.com/

My living with lupus blog.

www.chronicchicktalk.com
My website (still in progress)


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12/31/2007 21:35
redhairali
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Hi, I am no to this board. I have also had strokes. I have SLE and Lupus Nephrites and APS. (They source of my strokes.)I have lots of swelling and my brain drives me crazy some days. The wrong words coming out just really annoy me.

All I can say is I ALWAYS have a notebook near me at all times. I have a big desk calender on the back of my front door. Evey thing That I need to do that day is listed there.

My first stroke made me unable to talk. Things came back fairly quickly, but I seemed to have forgotten "him"....everybody was "she". That still an issue when I get tired. lol

Ali

Post edited by: redhairali, at: 12/31/2007 23:37


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01/01/2008 23:42
oneloopykat
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Welcome to the group Ali!! I hope you are feeling well and look forward to getting to know you!

Have a great day!

Kaitlan

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10/20/2008 14:05
TxLaLuppy
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I was explaining to someone the other day how I get foggy and cant remember words much less where I put things and my husband helps me (reads my mind) when I cant think of the words I am trying to say. I will even associate it with where its located, what it looks like but the word grows wings and disappears. Its embarrasing when you are talking to someone you dont know and it happens and I dont want to go into the "well I have Lupus" or try and explain. They look at you kinda strange if they dont know you like is she dumb? stupid? uneducated? It seems to be getting worse.

I have not seem a neuro in (I am ashamed to say) at least 6 or 8 years. I saw a couple of excellent ones when I was back in Texas but since we moved to Louisiana its been hard to find a good one for some reason.

I have miagraines and when someone mentioned:

severe headaches, dizziness-lack of concentration-fogginess in the head it kinda concerned me. I have sharp pains in the top middle of my head like someone stabbed me in the head with something sharp. They dont last long or happen with any regularity so I kinda blow them off. The Lupus is attacking my heart and it has crossed my mind (amazing

) that it could possibly be making its rounds to the brain but I guess I have denied that because I have enough on my plate already. Guess it may be time to put on my BIG girl panties and deal with it! Any suggestions?

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10/20/2008 14:50
mumeva
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Wow! Just reading your mail sounds like what my daughter is going through. She gets the stabbing pain on the left side of her head and than she gets the horrendous headache and then she starts stuttering. I have central nervous system lupus vasculitis and I believe tha my daughter has the same. She is seeing her regular physician and wanted to rule out migraines. She told the doctor that I had lupus so they are testing her right now. I have a negative ana which I have always had since I was diagnosed l5 years ago. My rheumy doesn't just look at the lab results but she looks at me and she listens. I get foggy in my head and since my brain hemorrhages I no longer have signal coming from that part of the brain. The neurosurgeon told me that I need an MRA every six months. I was told that it was lupus vasculitis not cerebritis. Its the blood vessels that are inflammed. I sure hope this has helped you if you have any more questions please write back.


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10/20/2008 15:40
minerram
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Hi, i am new to the group and know very little about lupus cerebritis. My aunt has had lupus for a very long time. She does not talk about it very much and i don't know what kind of lupus she has. Cn somebody explain to me what this type of lupus is?

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10/20/2008 21:22
tleigh71
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I believe lupus cerebritis is when the inflamation caused by the disease affects the brain. It would mean that she has systemic lupus which can cause inflamation in any connective tissue in the body.

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10/22/2008 21:09
TxLaLuppy
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I never really put two and two together but if the Lupus is attacking my blood vessels/heart, why wouldnt/couldnt it be attacking the blood vessels in your brain also. (An equal oportunity disease )

I SURE dont want to borrow any more trouble but you may do just that by not getting checked out huh? I guess I need to work harder on getting to the neuro for a check up.

Speaking of ANA's my 1st test came back positive and several others, but they dont all the time. So you definately need someone who looks at the whole picture or you get to ride the "Dr. rollercoaster" again allowing them to pass your back and forth in the mean time you have lost valuable time getting your disease under control.

IF YOU DONT READ ANYTHING ELSE PLEASE READ BELOW!!

Just a note for all of yall to think about...unless your condition is in a severe state dont let them keep on and on with the steriods...injected or oral. Especially if you are new to this journey. My pain guy went overboard on the cortisone and I developed Cushing's disease (like I needed another disease to add to the list!) I'll give you some of the symptoms that affected me...Half my hair fell out, It was replaced with a nice manly mustache and white facial hair growth, more weight gain, it weakened my blood vessels, built up plaque in the vessels and put me in the hospital 3 times in 9 months and 4(?) stents in my heart latter I was told by my Cardio Doc after he calmed down I could add Cushing Disease to my list and I was lucky to be alive. And the nice (Egor) tummor on the back wont go away without surgery (is NOT cancerous). But you know I may have a new costume for this Halloween!

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