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How do we know......
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Octoberschild posted:
How do we know for sure if something that goes wrong within our bodies is related to Lupus or not? I have had or do have so many things going on with me that I've read here and in books that happen to people with Lupus, Yet I wonder if what I go through is related to Lupus or is it something else. I feel like I blame everything that happens to me on Lupus. Anyone else question this?

I have a problem with my kidneys, I have a problem with my liver, I have several things wrong with my heart, I had a hysterectomy done when I was 36 due to severe Endometriosis and cystic ovaries. At that time I didn't know anything about Lupus or the things it can do to our bodies. I hadn't even been diagnosed with it back then. Since being diagnosed with Lupus I am learning more and more of what it is capable of doing. So I have to wonder if maybe I didn't have Lupus back in the early 80's when I had the hysterectomy and also was diagnosed as having an irregular heart beat.

Last weekend I took a trip to the ER via ambulance. I was home alone and started having problems with my heart racing. One of the newest problems with my heart. I have been on an aspirin a day for several years now, and also on heart medication for about 4 years. My cardiologist just recently changed the dosage and time of day to take my heart medication. So when I began having this feeling of a racing heart, I thought "I haven't taken my heart med yet and better do it." I also checked my BP as my cardiologist was concerned that my already very low blood pressure would go down more with this increase of my medication. To my surprise my BP was pretty elevated for me. I thought maybe something was right with my BP equipment and decided I'd turn it off and retake my BP in 15 mins. Upon doing this my BP went even higher, to me dangerously high. I decided to contact the consulting nurse that is provided through my medical insurance to get her opinion about some things I was feeling and the BP being elevated. I had began experiencing tingling sensations in my mouth, tongue, lips, back of head, down into my neck and into my arms. Along with that having nausea. The consulting nurse didn't feel that my BP was dangerously high not in the medical stand point of things, but high for what my would usually be. After telling her of the symptoms I was experiencing, she asked if anyone was with me. I told her I was all alone, she then told me she was going to hang up now and I needed to call 911 immediately. I did call for the paramedics. While talking to the 911 person, he asked me where I was located in my house. I was in my bedroom. He then asked if my door was unlocked, which it wasn't. I was told to go unlock the front door so the paramedics could get in. Upon trying to stand, I kept falling down. I then was told to crawl to my front door. They decided that I might be having a stroke and took me into the hospital. After several test and doing an MRI they diagnosed me as having a TIA (mini stroke). My vision in my right eye also became blurred during the first half hour of being in the ER, and my right side very weak.

I know Lupus can cause problems with our blood. But is that problem something that can form clots and cause us to have these TIA's or major strokes? Or is it because of my heart being in "A Fib" that is the problem? How does one know what is causing the problem? What can a Lupus patient do to try to make sure they don't have any future strokes? Has anyone else come across this problem?
Of one thing I am certain, the body is not the measure of healing - peace is the measure. by George Melton
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lisaisweavebee responded:
Wow! Sounds like you had a horrible ordeal! I hope you are feeling better and that they started you on blood thinners to help prevent another stroke.

To answer your question, I think each of us struggle with that question every time one of our body parts goes whacky...is it lupus or something else? I always end up running it by my doctor and letting him decide what to do or what to call it.

Sorry I'm not much help but wanted to reply to let you know I hope you feel better soon!
 
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Lupylisa44 responded:
Holy cow!!! Are you okay? That must've been really scary for you!!!

To answer your question, many people with lupus also have
Anti-phospholipid Antibody Syndrome (also known as "sticky blood") which can cause blood clotting problems. Here is some more info:

http://www.nhlbi.nih.gov/health/health-topics/topics/aps/

http://www.apsfa.org/tiasymptoms.htm

http://www.apsfa.org/aps.htm

Since lupus can affect anything in the body, and is different in everyone, and many people have overlapping conditions, it is very hard to tell which is causing what! I have noticed that a lot of ER docs seem to blame everything on lupus, and it is my opinion that they do so because they are just plain lazy!!!

I hope you are doing better!!! Please keep us posted and I will keep you in my prayers!!!

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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Octoberschild replied to lisaisweavebee's response:
Thank you for your input on my question Lisaisweavebee. I have not yet been put on blood thinners. My primary is doing a large panel of blood work on my this week to see what is going on before prescribing me blood thinners. I'm still waiting to hear back from my cardiologist for his opinion.
Of one thing I am certain, the body is not the measure of healing - peace is the measure. by George Melton
 
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Octoberschild replied to Lupylisa44's response:
Thank you Lupylisa for the information links. I always appreciate anything you can tell me regarding Lupus. I had read in one of the books you referred me to read about the blood problems Lupus can cause. Some times I feel like I'm going crazy with all these things going wrong with me, and then again maybe it's just getting older. lol

I was lucky not to have doctors in the ER that wanted to play the blame game on Lupus. They were pretty much straight forward on their diagnoses of me. I even asked my cardiologist about 3 weeks ago if my heart problems can be because of my Lupus. He just said yes there has been proof that Lupus can have an affect on a persons heart, but there was no sure way of knowing. I had asked him a couple of weeks ago if the "A-Fib" my heart is in at times could cause me blood clots, but he didn't feel mine was the type that could cause that sort of thing. This is why I'm so puzzled over what is going on with me.

I do appreciate your prayers and every ones thoughts. I am praying that this mystery is solved soon as I do not want to have another TIA or major stroke. Will keep you posted on what I find out.

Octoberschild
Of one thing I am certain, the body is not the measure of healing - peace is the measure. by George Melton
 
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1stLadyDi responded:
Yes, I had a T.I.A., determined after I had an MRI done. My body went wacky after having an abdominal hysterectomy last Spring. I had complications with a prolonged surgery & blood transfusion. It wasn't until after the surgery that I had the T.I.A. THEN, having several tests done, diagnosed with Lupus and sent to a neurologist, rheumatologist, and now cardiologist.

I pray that I never have to go through that again & am always praying to not have a stroke, etc....especially when I have what I refer to as "fire" or "electrical-type" headaches. I pray that you are doing better.
 
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shannielee74 responded:
After reading some of this, I am now concerned. I have sat with those same symptoms (other than the blurred vission) and just waited it out. I actually passed out back in August while walking to take the commuter train station to head into work. They never did a CT scan or MRI of my head. They did do an echocardiogram of my heart and it looked good.
I have the headaches like 1stLadyDi. I guess it's a good thing I see my PCP on friday.
I hope things get better for you and soon. You've had a rough road lately. I'll keep you in my prayers!
Shannielee74
~~~Life is what happens when your busy making other plans...John Lennon~~~
 
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Irishryes replied to 1stLadyDi's response:
Thank you 1stLadyDi for sharing with me, as well as the prayers. I use to wake every morning with severe headaches. It just all of a sudden came on and became a daily thing. After talking with my primary about them, she did an MRI to make sure it wasn't a tumor or anything serious. After that came back ok she then put me on medication to stop the headaches from happening. For the most part I don't have the headaches as long as I remember to take my medication. I do have a few minor headaches from time to time, but nothing like they were.

I pray all the time too that I don't ever have another stroke. Being told I'm at a high risk now of having a major stroke is not anything that has a pleasing sound to it. Very scary thing! I pray that research can find a cure soon for Lupus. I pray for all those that have the burden of this disease as well. Take good care!
 
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Irishryes replied to shannielee74's response:
I sure hope you will be talking to your doctor about those symptoms Shannielee74. If you are having TIA's (mini strokes) you need to make sure some one around you knows what the stroke symptoms are so they can keep a watch out for them.

I just saw my primary yesterday to have blood work done. She's checking my cholesterol to make sure it's not out of control and checking some other things as well. My cardiologist decided to let my primary handle my stroke issue. I tend to get frustrated with the "not knowing" the cause of things, and then the waiting to see what the test show if anything. I'm afraid I don't have much patience when it comes to that. lol

Take good care of yourself. I keep a journal of this journey I'm on with Lupus. It helps when I don't see the doctors that treat me for my Lupus from 6 months at a time. Then I can take it with me or go through it and make notes of things that have happened since I last saw my doctor. I don't know about you, but I seem to be more in a Lupus Fog then out of it. lol


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