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Hello everybody,

I had a mri without contrast last month and it indicated that I had an uncommon form of CNS lupus vascultitis. I was unable to do the one with contrast because of low kidney function. My neru said that it didn't look that serious but was hard to give me more explanation because no contrast done. Can anyone explain what cns lupus vascultitis is and its symptoms. If you have this, can you please share your stories and offer advice.

Lately, I have been feeling that I have been brain damaged - can't concentrate on anything ( even watching tv); trouble expressing myself (having a hard time writing this); barely talk ( I used to be one who talked a lot and have opioions (sp?) on everything; I run out energy when I talk for a long time. My tongue feels agrevated in my mouth sometimes I find myself doing strange things with my mouth such a bitting my teeth and switching my cheeks (am I crazy, retarded, or strssed). Simple tasks such as perparing food is diffucult because I have to do it slow. I've also been suffering from insumania (sp?) but slept better last night after buying the herb form of valium. I know in my heart that I'm not the same person and and that something is affecting my brain. This has caused depression and anxiety. My main concern is if this in fact cns lupus vascultitis will it go away or will it be permenant (sp?). Also, how does one distinguish symptoms of cns lupus vasculitis from a stroke?

I'm 31 and had lupus since 12 years old (only butterfly rash) that went away at 19. I then developed systemic lupus at 21. For the past nine years, my only issues were skin, mouth sores, finger problems,protein in urine. Last year was the best and it seemed that I was going into remission. Then, the first day of this year, I had a flare and from there everything has been going downhill. I started having high blood pressure and then bam my kindey function goes down. After my first cytoxin and sol medrol, my blood counts got so low that I had a blood transfusion. I had some success on the following treatments but three weeks ago found out I was in low stage 4. My last test however was good. I'm in stage 2 but who knows how long that will last. I'm very fustrated. I've never faced anything this serious in my life. I have no friends or extended family (live in other states). I'm on disability. I can't talk to my parents. They are having trouble in their marriage and have massive bills. I just started telling my father yesterday but I don't think he really understands and just keep telling me to pray. I have started to get into my faith and its the only thing that has kept me going. If anybody is christian, please put out some prayers for me.

Candice
 

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(((((((((Candice))))))))),

First of all it is nice to meet you. I will certainly add you to my prayer list, that is a promise.

I am so sorry that your Lupus is giving you such a rough go of things. My Lupus has also attacked my CNS and I know how scary it can be.

I do not know what you mean by stage or stage 2??? Sorry I am just unfamiliar with this and unsure what it means.

What does your Rheumy doctor say about all of this? What about switching up your medicine to see if something else would work better?

I am pretty new to Lupus and not so knowledgeable to give good advice but I sure can pray and will do exactly that for you.

What part of the world do you live in? I am in New Jersey, USA.

Hope to get to know you better and try and keep your chin up.:wink2:
 

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Hi Candi,

You sure have had a rotten time of it this year (((((((Candi)))))))).

CNS Vasculitis in itself is very uncommon, quite rare really when you consider the numbers as far as who gets Lupus and the very few among them that then get CNSV.

Are the symptoms listed the only ones you have had? They don't really jump out as being consistent with CNSV which I have (currently fairly well controlled on Imuran). It's very difficult to tell what brain lesions are from if no contrast is used and even when it is used sometimes.

Some of the symptoms of CNSV are similar to trans ischemic attacks (mini strokes) but there are lots of others varying slightly in the individual.

Will you now be seeing your Rheumy and getting his opinion on what your Neuro has said?

sending hugs,

love
Lily
 

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Dear Candice,
Yes, I am a Christian and of course I will pray for you,but you need every other sort of help too. I know you can't talk to your parents, but we are here. Also please make sure your Doctors are telling you things in a way you understand.
I have brain issues caused by Lupus and am unbelievably stupid at some things. For instance I always look at a tin opener as if I'VE NEVER SEEN ONE BEFORE AND i AM LETHAL WITH EVEN A SIMPLE MOBILE PHONE. i CAN'T DO JIGSAWS OR PLAY EVEN KIDS' COMPUTER GAMES! oH Sorry for the capitals that is another thing, my fingers go all over the keyboard sometimes.
Sending you Love and Please don't be hard on yourself, you will adapt.
x Lola
 

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Hi Candice, and a very warm welcome to you and to this site. everyone
here, is here to help and fully support each other. I am probably
wrong, but I got the impression that you did not have a dr., am I right?
All I can suggest is that you get to your GP, and get him to give you a referral to be seen by a Rheumatologist. Let us know soon, and be well.:wink2::rolleyes:
 
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