Have any of you been told your having mini-strokes due to your lupus? I was recently told that my MRI showed I had had at least 2 strokes in the recent past, I was surprised to say the least, no paralysis or anything like that, the only thing I've noticed is the headaches are getting much worse, and that mentally I know I'm slipping I just figured its part of having lupus. I've had this a very long time and nothing surprises anymore, I find that I ignore pretty much everything as the doctors always tell me its from the lupus, and look no further, while this is frustrating I was wondering if any of you have had a similar experience?
Hi hopeful I had a couple of mini strokes unfortunately a couple months back but I did have symptoms that first started with numbness on my leg then my arm up to my face and the side of the face would paralize as well to where I couldn’t speak for acouple of seconds that went on for a while until I got an MRI done with some ink that I can’t remember the proper name of it right now to see if there was anything else going on like a blockage or something. So that’s when the neuro said I had lil spots that were left like scars on my brain that showed I had had the mini strokes caused by swelling on the white matter of my brain apparently caused by my LUPUS ofcourse and I was also getting really bad headaches, dizziness and blurry vision that I already had from LUPUS as well so I would just ignore but since then and the meds he gave me to sleep better and headaches guess the swelling in my brain has gone down because thank God the mini strokes have stopped oh and I’m on a high dose aspirin regimen now to prevent a major stroke that I guess I will be on for the rest of my life. So best of luck keep us updated God Bless.
Hi Hopeful,
Do you have sticky blood caused from lupus? It causes blood clots which in turn will cause strokes. I had an ischemic event to my colon and I am being checked for this. Have they put you on blood thinners? Hugs.
Mary at least they gave you some type of explanation, all they told me it was from the lupus, and most likely I will have them again, when I asked if another major stroke was in the future all the neuro would say is its hard to predict and offered no explanation for the headaches his attitude was dismissive from the start when he read that I had lupus, nothing new there.
Reddog yes I have APS and vasculitis along with a bunch of other things, I was on comaudin until I had a near fatal GI bleed, they couldn't get me stabilized over the 2 years I was on it, come to find out latter its possible that some lupies are resistant to coumadin, since then I only take high dose aspirin, nothing else. They wanted me to take pradaxa I flat out refused nearly dying woke me up to just how dangerous the meds and doctors can be and how really insidious Lupus really is. I wouldn't wish this disease on my worst enemy. thanks for the input
Boy this disease is confusing. You had a near fatal GI bleed from the blood thinner and I was told I was bleeding because part of my colon died because something stopped the blood flow to my colon such as a blood clot. They also told me that it could have killed me. Now every time I start to feel sick to my stomach I get worried the same thing will happen. My first test for aps turned out positive and I will be having the second test in two weeks. The mra did not show vasculitis. Just curious what type of issues did you have with the comaudin?
If your doc isn't treating you for the strokes or trying to stop them maybe it's time to seek another opinion? I have cns lupus and my neuro has no experience with this so I am thinking I need to shop for a new one. Also I get severe headaches because of the cns lupus. The neuro put me on topiramate for the headaches. I think this along with the cellcept has helped. There not as often. They used to be every night all night long. Good luck, I hope you find some help.
Hi Hopeful,
The cns lupus really affects my brain and thinking. Disregard my question about the comaudin, I realize that is what was causing your gi bleed. My brain function has slowed down from the lupus so I miss things and am not quick like I used to be. Sorry.
Don't feel bad I am the same way, I swear sometimes I'm going senile but like everything with lupus you learn to adjust and adapt. although people thought it was strange when I had post it notes all over the new house to remember where I had put stuff, such is life when you have lupus.
Hi Hopeful3
I had a mini stroke (tia). I didn’t even know it. We went to dinner one night and I don’t drink. Coming home I could see only 1/2 of the car in front of us, it looked like someone took a chainsaw and cut the car in half. It only happened for maybe 15 seconds and I could see fine after A few months later I went to my Opthamologist and just mentioned it to him. He sent a note to my PCP and she sent me for an MRI. They told me I had a TIA. I’ve been fine ever since. That was over 2 years ago.
Cindy
Hi
You Lupies that are or were on coumadin, How often did you have an INR done? Didn’t you have regular blood tests done???
I had a blood clot in my colon but fortunately my Dr diagnosed it and I had part of my colon removed that was 15 years ago. I’ve been on coumadin ever since. I was diagnosed with SLE about 6 years ago. When I was diagnosed I asked the rheumy which kind of lupus I had and he said “SLE the worst kind.” If you have stomach issues I’ve been told not to take aspirin ever.
Take care everyone.
Cindy