Lupus

I am 36 years old registered nurse.  December 5, 2007 I had a stroke.  After several test the doctors are saying that I have lupus and it is in the brain area.  I do have some confusion (putting my shoes on the worng feet or putting my clothes on backwards).  I wondering what should I expect and are these symptons of Lupus in the brain area    

[mercygracious]

Hi there!  I am sorry to hear that you have suffered a stroke!!  Was it mild or something worse??  Did you never have any symptoms of anything to lead you to believe that you had any kind of a medical condition that could cause something such as this?  Did you ever have brain symptoms?  I have had extreme brain symptoms along with other systemic symptoms throughout my body and a MS specialist told me he thought it might be Lupus but 4 other docs have told me NO!!!  There have been multiple findings of small white matter area throughout different parts of my brain I think mainly the frontal lobe.  I had a concussion in 2001 when I had a rollerblading accident and then started getting symptoms in 2003 starting with tingling in my legs, arms, head, fatigue, balance problems, weakness in legs and too many others to mention.  I have every symptom anyone could think of I think.  But did you have any of these type of symptoms or other ones that you can think of to mention?  Have you seen your MRI?  What does it look like to you ?  Can you kind of describe the findings or what was written on their report?  So what has the doctor told you to do at this point?  Keep me informed on this please!!!!

[Joni686]

Hi Bess,
I read your post and I am wondering about a few things.  Has your doctor done a Lupus panel on you?  Do you know what your ANA is?  I am wondering what other symptoms you may have that lead the doctor to believe it is lupus.  Do you have body aches?  I understand the memory problems.  I have a terrible memory and I get confused a lot.  I also have a loss for words at times.  I can be in the middle of a sentence and not be able to think of a word.  It's embarrassing and frustrating, not to mention scary.  Please let me know how you are and if you have had a lupus panel.  I can try to help you as much as I can.  I have had lupus for almost two years now and mine has affected my heart in the last few months.
God Bless you,
Joni

[mercygracious]

Joni,

Did you have a brain MRI??

[Joni686]

Hey girl, yes I had an MRI and an MRA.  My Neuro. said I have a "beautiful brain" and he was excited to see such a healthy brain.  Said he doesn't get to look at healthy ones too often.  lol  The brain fog I have is common with lupus and fibro.  I am swelling everywhere else in my body so why not my brain.....  I am so fatigued at times that I can't really get the words out correctly.  Have trouble typing too at times.  lol  I also want to get off the premerin I am on.  I am all set to start bio-identical hormones but just haven't done it yet because I have been sick with my heart and don't want to take any chances until I feel better.  I know they will be better for me.  i have read that premerin can cause lupus to be worse.  I had to have a hysterectomy when I was 26 from endometreosis and have been on premerin for 20 years now.  i have no doubt it has played a part in this lupus **** with me.  Anyway, I remember my memory getting a little bad back in my thirties and I think the premerin is the cause.
Uggg I am having such a choking feeling tonight I can barely stand it.  I ate a few doritoes and I could barely get them down.  Earlier today and yesterday I was better.  I can't figure this out.  I hope to have an answer from the ultrasound tomorrow or Tuesday.
Take care my friend and let me know how you are.
Joni

[mercygracious]

Hey Joni,

I can't believe you have been  on Premerin for 20 yrs.  I didn't know that was even possible.  OMG, you are lucky it hasn't killed you.  That is so dangerous.  I hope you can get on the bioidenticals soon.  I need to have my hormones checked as well.  Don't know if I am perimenipause or not.

[Joni686]

Yes I have been on them for since I was 26 and had to have a hysterectomy.  I used to take 3.5 mg. daily for about 10-12 years until they stopped making that dosage (if that tells you anything) now I am on 0.9 and I tried to get off them several months ago and started having hot flashes etc.  I am ready to start the bioidenticals but I am just waiting on this vasculitis to be more cleared up.  One thing at a time.....  I did recently read in a new book I boguht that Premerin can cause lupus falres to be worse.  It named it by the exact drug not just calling them symthetic hormones but named Premerin.  I can't wait to get off of them!
Sorry to change your post into this conversation Bess.  How are you doing?  Has anything changed?