I am looking for anyone having lupus, that may have had a stroke or brain lesion. Anyone out there?
Hi. Had a stroke about 2001.
Did you have lasting effects from it? Did they say it was because you had lupus?
Lupie said:
Hi. Had a stroke about 2001.
After the initial stroke I had balance issues which remain. My eyesight went in an instant from 20/20 to needing glasses. I had a brain stem stroke so it affected a lot of diff areas. I get sea sick and car sick and feel pressure in back of head where stroke was. I had and still have a hard time making decisions. Weirdly I also have noticed I can’t recognize faces. I have dizziness if I turn my head quickly which incidentally how the stork happened. The drs said it was from the lupus and due to the associated anti phospholipid antibody syndrome. Caused a clot. I take aspirin everyday. Newer studies show it works as well as Coumadin etc though I’m Not convinced. No lesions showed on the brain but then again I had a brainstem stroke so make that’s why. It’s just something you learn to deal with and in the long run not bad after suffering a stroke. It can be managed with medicine to prevent future strokes.
Thank you for sharing what you have been through. It was helpful. Were you extremely fatigued before or after your stroke? Did you seem agitated before or after your stroke? Were you kinda in shock when it all happened. It seems like you have a really great outlook on things.
I was fatigued before but not sure more than usual. Yes I was extremely fatigued after. Seemed like it drained all my energy for a while. Walked around in a fog for months. I wasn’t agitated before the stroke. Afterwards I’m not sure as much because I was rather removed from being extremely perceptive like I was beforehand. I definitely was shocked as I was only 40 and perfectly fine, if you don’t count the lupus. Lol. Over time a lot of it does get better. Your brain makes new pathways around the damaged area and adapts. The brain is quite remarkable. Thanks for the compliment. I think you do what you can do, explore the avenues of treatment and don’t worry about the rest. I’ve been sick twenty years so I’m well practiced and God hasn’t let me down once yet.
I am a person of faith and do trust God. Thanks for your kind words. Thanks for sharing.
You’re welcome. We are all in this together. Sharing always helps for both people! Take care
I didn’t have a stroke but I had something called Acute Dissemenated Encephalomyelitis in July 2013, it caused brain lesions that are still in the process of healing.
Brittany, that sounds very interesting. What happened? How did you know you had a problem? What did they have to say about the brain lesions?
It started off as a sinus infection that became unbearable. I went to the hospital and they gave me meds. The instant I took the meds I went unconscious and woke up a week later. The doctors said I was in a coma. The lesions were caused by inflammation in the brain and spinal cord. It caused cognitive dysfunction, behavioural changes, and motor difficulties. My neurologist has said he believes my attack was caused by Lupus (I was diagnosed with lupus shortly after) but because the disorder is so rare a lot of my questions go unanswered.
Grace said:
I am a person of faith and do trust God. Thanks for your kind words. Thanks for sharing.So am I. I thank God for every new day
Hi Grace, I have had a few strokes and a ton of TIAs. I also have Demyelination in my brain, which I guess you could call a lesion. I have APS so I clot very easily. My left side is weaker and my throat and back of my tongue on the left are paralyzed. The biggest stroke felt like my tongue was swollen and when I tried to talk it came out sounding slurred and I saw something like a black shade slowly covering my right eye. The demyelination makes me feel like I am a bit slow and I get light headed a lot when standing. I lose my balance a lot and have issues with short term memory.
Hi Cameron, wow, thank you so much for the detail. I’ll have to look up demyelination. It sounds like the whole situation was really a huge thing. How in the world do you get by with your tongue and back of of throat on the left side paralyzed? And the black shade slowly covering your right eye, what were you thinking when that happened? When you say, you are a bit slow, do you mean in moving or thinking or both? How old were you when you started with all the TIAs/strokes? Are you on medicine to try and stop further strokes? I hope I am not asking too many questions. I do find it very interesting. Thank you for contacting me about all of this. I really appreciate it.
Brittany, thank you so much for sharing your story with me. I am totally fascinated by the timeline and detail of what happened to you. I was starting to wonder how many have suffered some of the things you are talking about. How do you get by with all the many changes that have happened to you? How hard is it to have a lot of unanswered questions? I really appreciate you taking the time to share with me. Thanks so much.
Brittany said:
It started off as a sinus infection that became unbearable. I went to the hospital and they gave me meds. The instant I took the meds I went unconscious and woke up a week later. The doctors said I was in a coma. The lesions were caused by inflammation in the brain and spinal cord. It caused cognitive dysfunction, behavioural changes, and motor difficulties. My neurologist has said he believes my attack was caused by Lupus (I was diagnosed with lupus shortly after) but because the disorder is so rare a lot of my questions go unanswered.
Hi Nan, thank you for telling me all about what you have been facing . How did you know you had the TIAs? Would you keep my informed as to what you are told at your consultation? I hope they can get to the bottom of this for you and can give you some answers. Blessing to you too.
Nan said:
I have had 2 TIA’s. The first was in 2007 and the last one was in 2011. At the time of the second TIA they did a EEG which showed I had a brain lesion on the right hemisphere. Since that TIA I have had more issues with balance, memory, mathematical calculations. I just had a brain MRI and I have specks of white matter kind of all over. It didn’t say anything about the lesion though. A couple months before the TIA I hit the top of my head on the roof of the car. It was a tweet, tweet moment, but I did not lose consciousness. A couple hours later, I was vomiting and so dizzy. I was diagnosed with a mild concussion and vertigo. My vertigo has been corrected. Two weeks from today I am going to the University of Michigan for a consultation in rheumatology department. Hopefully I can find out why I am having some of these issues because TIA’s are suppose to go away very fast and not leave you with problems. It seems to me since that TIA my health has taken nose dive.
I hope this answers your questions!
Blessings,
Nan
The first six months were probably the hardest. I was in a really bad flare (lupus wise). Many of my symptoms would require a visit to the hospital almost every other week. During my six months I was an outpatient. I was really glad to be home but it was difficult adjusting to my new “normal” I read everything I could get my hands on that was lupus related. I searched for everything I could about ADEM (of course there isn’t very much). After that I pretty much learned to appreciate everyday. Being able to get out of bed on my own is a victory for me. Any little thing I can accomplish in a day is a victory. Pretty much all my questions regarding my ADEM has pretty much been pushed under the lupus umbrella. Everything is apparently lupus related. It does get a little frustrating at times but I’m thankful to still be here, alive and kicking.
Hi Grace......Yes I have SLE and have had (2010) 4 strokes and now about 30 TIA's....I have also had in the past multiple
blood clots to the lungs(2006). At that time they thought I had MS because of all the white matter, but then came back and said no it is just white matter.... Why are you having the same?
Hugs...Bernice
Hi Bernice, do they think all of that was related to having lupus? Was the white matter considered a brain lesion? Well I was told in the ER I had a stroke. Then the neurologist said no, it’s a lesion. The rheumatologist said it’s not lupus related but a stroke. So I’m not really sure what to think. I have follow ups with both dr. But I thought I would ask everyone or anyone for input that might be good to know. Thank you for sharing your situation. Are you on meds to prevent others? How did you know you had TIAs? What happened when you had your strokes?
Sorry it took me so long to reply. I was taught by the therapist how to turn my head or lower my chin when I swallow. I am slow in thinking. I am on Warfarin and Aspirin to thin my blood. My 1st stroke was at age 26, right after my 1st heart surgery. LOL, I don’t think you’re asking too many questions, that’s how you learn. The thing that happened with my eye was only during the stroke. I was taking a shower when that happened and it was very scary, I thought I was going blind. Luckily it didn’t last long. They called it Amaurosis Fugax
Grace said:
Hi Cameron, wow, thank you so much for the detail. I’ll have to look up demyelination. It sounds like the whole situation was really a huge thing. How in the world do you get by with your tongue and back of of throat on the left side paralyzed? And the black shade slowly covering your right eye, what were you thinking when that happened? When you say, you are a bit slow, do you mean in moving or thinking or both? How old were you when you started with all the TIAs/strokes? Are you on medicine to try and stop further strokes? I hope I am not asking too many questions. I do find it very interesting. Thank you for contacting me about all of this. I really appreciate it.