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Elevated d-dimer


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Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

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  • 1 month later...
On 4/15/2021 at 4:22 PM, TorturedSoul said:

Hello, it's me again. Something is just confusing me and I wanted to see if anyone had any insight. I definitely have autonomic dysfunction and have probably had it all my life. I pretty much have symptoms every day.  However I've had 2 crashes that have lasted a year each. This past crash was horrible. Feeling of weakness in my limbs every time I ate, suffocating feeling at rest (that eventually was helped by salt water twice a day) extreme lightheadedness regardless of vitals (thank God for acetyl l carnitine and aloha lipoid acid) nausea, hyperventilation episodes, weakness...it felt like my whole system was just shutting down. My breathing was shallow. Limbs felt like jello. And nothing showed up at hospital (went 4 times). The only thing that showed up was an elevated d dimer. So they scanned me head to toe to see why. Of course the radiation worries me but I felt like I was dying. Anyway they never found a clot. They didn't scan me all in one day. This happened over the course of a few months Bc my symptoms were unrelenting. What I can't wrap my head around is why is my d-dimer coming back elevated?  It did when I had a crash a few years ago as well. I always have symptoms on a daily basis but during these crashes I would go back and forth to hospital with extreme symptoms. I don't know how I made it out of this last one. I thought it was the end. I don't know if anyone has any ideas as to why these levels are elevated during crash. In fact in the beginning of this one I had an ache behind my shoulder blade. Night sweats with a heart rate that wouldn't go down  short of breath. Drifting and waking up hyperventilating. D dimer elevated and yet CT scan was clear. What gives?

How long to pull out if it?  I'm on 9th week.  Doing 6 liters h2o. Salt. Hard to eat so weak.  

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@E pots - whenever I got that bad I went to ER for IV fluids, which always makes me better. Nothing else would help once I got that bad for that long. 

 

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  • 2 weeks later...

It took a year for me to get out of the last crash. I don't understand why I have crashes like this every few years. I don't understand why my d-dimer is elevated during these crashes as well. I may have EDS so I was thinking is this vascular (I have some skin symptoms) and the d-dimer is reflecting bleeding that's happening somewhere in my body? Are these crashes because of some sort of internal bleeding. Hemoglobin is always normal though. CT scans are clear. I don't understand what's affecting my blood flow. I don't understand why both of my children are showing symptoms since they were babies/ toddlers they have always displayed symptoms of autonomic dysfunction. This last crash felt like death.  I never knew a person could feel that ill with no diagnosis or clue as to why. Just felt like my blood flow was severely impacted. It felt like blood wasn't reaching my lungs/ brain. I still struggle but nothing like last year. I can only pray it doesn't return to that extent 

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So sorry.  I have also had severe crashes every two or so years.  No identifiable trigger.  Between the crashes I feel pretty well.  I agree that is is amazing one can feel this poorly and have something benign.  IV fluids are the only thing that helps, and only bc it keeps me from having to lie down constantly.

I've never had elevated d-dimer that I am aware of.  The only thing that gets out of whack for me is potassium goes a bit low.  Sometimes magnesium too.  And this is despite eating and drinking--no vomiting or diarrhea.

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