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Lupus & Stroke

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I have lupus, and have had since I was 14. I had a major stroke a few months ago. Has anyone here experienced this or do you know someone. Also, my kidneys don't work so well. I'm on a lot of chemo(cytoxan) and prednison and various other drugs. The stroke was due to a blood clot in my brain. I'm 26 Question
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First Helper property2677
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Users who thank property2677 for this post: kayjay6845 

replied May 17th, 2004
Experienced User
Mini Strokes
My brain mri looks like i've suffered from tiny strokes (or tias) at least that's what my neurologist has told me. But i'm too young to have that kind of thing. I have the symptoms that go with it however. Numbness in my hand and sometimes my toes. Or, it could be vasculitis says the radiologist.

So, i'm in the midst of being diagnosed. Have been going through this for two years now.

Are they sure what you had was a stroke and not vasculitis? Vasculitis in the brain is one of those things that people with lupus can get and they (vasculitis and tias) look the same on an mri.

Sounds like your doctors are doing what they can to help you.

May I ask what your presenting symptoms of lupus were at the age of 14? I'm just wondering. I think I have lupus, and I think i've had it most of my life, but it's mostly been mild except for a horrible flare during a pregnancy a lot of years ago. The docs back then thought it was preeclampsia, but it was severe in that my kidsneys shut down and I had a pneumothorax. I recovered from that and was fine for many years.
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replied May 17th, 2004
Re: Mini Strokes
The doctors are sure I had a major stroke. I had to relearn to walk. I could not use the left side of my body. I had been having spottin in my vision right before the stroke. The mri proved I had a stroke toward the back of my brain. The first symptom of lupus I had was the malar rash on my face. I also had lupus nephritis...And still do. I have seizures due to the lupus affecting my brain. I have bad osteoporosis because of the predinisone. It took my doctors two years to officially diagnose me. Smile

quote="tallwoman"]my brain mri looks like i've suffered from tiny strokes (or tias) at least that's what my neurologist has told me. But i'm too young to have that kind of thing. I have the symptoms that go with it however. Numbness in my hand and sometimes my toes. Or, it could be vasculitis says the radiologist.


So, i'm in the midst of being diagnosed. Have been going through this for two years now.

Are they sure what you had was a stroke and not vasculitis? Vasculitis in the brain is one of those things that people with lupus can get and they (vasculitis and tias) look the same on an mri.

Sounds like your doctors are doing what they can to help you.


May I ask what your presenting symptoms of lupus were at the age of 14? I'm just wondering. I think I have lupus, and I think i've had it most of my life, but it's mostly been mild except for a horrible flare during a pregnancy a lot of years ago. The docs back then thought it was preeclampsia, but it was severe in that my kidsneys shut down and I had a pneumothorax. I recovered from that and was fine for many years.[/quote]
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replied May 17th, 2004
Experienced User
I'm Sorry to Hear You've Had to Deal With So Much
With this disease at such a young age. Was the stroke related to the lupus? Or was it just an additional thing? I worry about having a major stroke too. We can live without a lot of things in our bodies, including our kidneys with the help of dialygis. But when our brains are affected, it really is a scary thing, isn't it? I don't like to worry, and I want to live my life as if there's nothing wrong. But sometimes, when i'm driving, I just pray, god don't let anything happen while i'm driving. I don't want to hurt anybody else. But what can I do? Stop working and go on disability because of "what if"? They don't award disability for "what if." and so, I continue day by day and hope and pray for the best.

My neurologist put me on aspirin therapy. I take a baby aspirin every day. But I worry about what it might do to my kidneys. My urine is showing blood in it.
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replied May 18th, 2004
Re: I'm Sorry to Hear You've Had to Deal With So Much
I don't like to worry either. The stroke was a result of the anticardiolipin syndrom related to lupus. I ignored my doctors when they told me to take my coumadin, prednisone ect... I'll take the meds from now on. You are right about the driving. I can't have someone haul me around everywhere and I am definately not quitting work. Technically I am not supposed to drive, but the stroke affected my left side, so I don't see a problem. I drive well. How long have you been dealing with the symptoms?? Are you in a flare-up now or in remission??

tallwoman wrote:
with this disease at such a young age. Was the stroke related to the lupus? Or was it just an additional thing? I worry about having a major stroke too. We can live without a lot of things in our bodies, including our kidneys with the help of dialygis. But when our brains are affected, it really is a scary thing, isn't it? I don't like to worry, and I want to live my life as if there's nothing wrong. But sometimes, when i'm driving, I just pray, god don't let anything happen while i'm driving. I don't want to hurt anybody else. But what can I do? Stop working and go on disability because of "what if"? They don't award disability for "what if." and so, I continue day by day and hope and pray for the best.


My neurologist put me on aspirin therapy. I take a baby aspirin every day. But I worry about what it might do to my kidneys. My urine is showing blood in it.
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replied May 18th, 2004
Active User, very eHealthy
Strokes are something that someone with the anticoagulant and other issues do sometmes need to worry about.

I am so sorry you've had to deal with so much! It's amazing to hear what lupies go through...

As for driving, please be careful. I know I had to stop driving for almost a year because of complications from lupus...It wasn't easy. But I did for my safety and the safety of others.

Hugs,
ladybrannon
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replied May 24th, 2004
Experienced User
Strokes
I've also had a stroke a few years ago. My rh and neuro-drs.,both told me it was caused from having lupus.I still sufer from the effects of it.I have spoken of it in past post,so I won't go in to all of it again,but it is a scary thing!! Sad
sharon
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replied June 20th, 2004
Lupus And Blood Clots.
I have factor v leiden disorder, protein c deficiency and homeostasis thrombosis. All of these things are common in lupus sufferers and are responsible for blood clots. My family has all been tested for these disorders because they are genetic. That is how I found out I had lupus. I have all the disorders but my brothers and sister and my children only have one of them. I have to inject heprin every time I travel for more then an hour, take aspirin daily and also folic acid and b12. These were all prescribed by my hemotologist.

I also have severe migraines so I am watched carefully by a nuerologist as well. I am on a medication that opens the vessels in my brain during the headaches to keep any clots from entering my brain, if there are any.

Good luck to you and please be very careful.
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replied February 15th, 2010
lupus related death ( SARAH )
My niece was diagnosed with lupus at a young age and died 3 months ago from a major stroke she suffered while in the hospital with spinal meningitis. the stroke occured in the back of her brain which left her brain dead. we didn't know it could happen and where not prepared in anyway. This has left our family devastated My sister cries all the time. my niece was only 17yrs old she would have been 18 this month. I'm not sure what caused it, I only know my sister blames herself as well as the doctors for this devastation which as left her life empty and full of misery. Her name was SARAH. I wish someone could tell me what my have caused it so my sister will find some peace. So that she will at least quit blaming herself.
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replied March 12th, 2010
Re: Lupus and Strokes
I am a long-time lupus sufferer that suffered a moderately severe stroke in the back of my brain about four weeks ago. Doctors say that the stroke was caused by a clot. Last year this time I started having seizures. My rhumy, neuro, and pc agree that the stroke and seizures are lupus-related.
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replied August 26th, 2010
lupus & stroke
kstein831: my friend, a long-time lupus sufferer just had a stroke last week. his right side of his body was affected so he can't walk unassisted. did you have extensive rehab? how are you doing now? any suggestions?
thank you.
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replied November 14th, 2010
New Diagnosis
My husband was just diagnosed with lupus, he is soon 50. His brother had a stroke at 16, has been bedridden ever since. Is it possible that his diagnosis is genetic and that possibly his brother, who 35 years ago had a stroke, could possibly have lupus which caused his stroke as well? It is just all making so much sense in reading about all of the symptoms and everything else that goes with Lupus.Should I expect my husband's rheumatologist to explain and answer any and all questions? Just curious. Thank you.
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replied February 18th, 2011
Similair Story
I myself have been tested for lupus and came back with 2 of the signs in my blood. Last week I suffered from a small stroke while I was sleeping. Im 18 years old and so when it happened I really didnt even realize it. People with lupus are more likely to have strokes then those without.
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replied May 30th, 2011
strokes and lupus
i am 35 years old and i have had 1 major stroke and 5 tia's. I was also diagnosed with Lupus about 6 months ago, after my 2nd and 3rd tia. can the lupus be causing these?
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replied May 30th, 2011
strokes and lupus
i am 35 years old and i have had 1 major stroke and 5 tia's. I was also diagnosed with Lupus about 6 months ago, after my 2nd and 3rd tia. can the lupus be causing these?
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replied August 2nd, 2012
My mum has lupus & had a stroke 2yrs ago due to blood clot on the left side of the brain caused by lupus. Luckily I was with her in the car when it started or heaven knows what would've happened , she needed steroids 2 build up her strength b4 they could operate 2 remove it & she had six wks intensive rehab , she then ended up back in hospital as the lupus had infected her bone marrow & needed chemo she still has problems relating 2 the stroke which happened 2yrs ago & can definitelynot drive , I hope u never have an accident or cause one . How selfish of u 2 put others in danger , in my opinion its as bad as drink driving !
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replied February 7th, 2014
I've had Lupus and Sjogrens for years. Last week I had a couple of seizures, at least I think they were seizures. Then I started being confused and not able to understand or talk in any way that sounded coherent. I didn't even know my birthday. I was out of it for 2-3 days. Could That be a stroke? I had an MRI and MRA today. I'm waiting to hear from my Rheumatologist. Any advice?
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User Profile
replied February 11th, 2014
Good day!
Thank you for asking. I am really sorry for your illness. From the presentation and history it seems two vital organs that is brain and kidneys have been affected severely. Resulting in lupus cerebritis and lupus nephritis.
Sign up to some lupus affected programmes and share what your feelings are there. it will give you moral support. Rest staying in touch with your rheumatologist and compliance with the medicines prescribed is the sole hope to keep you in remission to keep the further damage limited.
Remember lupus doesn't get treated. It can only be managed. I appreciate your fighting with it for 13 years. keep fighting.
Regards
Khan
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