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About jenniferlynne76

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  • Birthday 01/28/1976

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    Cleveland, Ohio

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  1. Thanks everyone for weighing in. I really am SO lucky I went in when I did and didn't just chalk it up to a POTS flare. They ran the d-dimer which came back positive, then did the CT and there it was: clear as day. I go back to the neurologist Wednesday. He is most concerned right now with me staying as active as possible to prevent additional pooling (since that could have caused the clots). But he also wants me resting/no real work for st least two weeks. So for the time being we are upping my mestinon by one dose (from 3x a day to 4) and he wants me on the treadmill for 5-10 minutes at a ti
  2. Hi all, Finally back home after a five day hospital stay. My husband took me to the ER on Friday night after what I thought was just a really bad POTS flare, marked by chest pain and shortness of breath, turned out to be one heck of a pulmonary embolism. I am VERY lucky I got there when I did. It was later discovered that I also have a clot in my left leg. Now, since I've been on birth control for 20 years they are chalking all of this up to use of hormonal contraceptives for so long. I do wonder through, any of you out there with dysautonomia also have a clotting disorder or similar experien
  3. Bebe, The pain you describe is just about exactly where I experience mine. Like you I'm beginning to think it will continue to come and go at its whimsy (heck, doesn't everything with this crazy syndrome?!) And I laughed when you mentioned it couldn't be from exercise, because like you, I haven't lifted and arm/chest muscle in months. LOL I promise, if I ever figure anything out I will let you know, too! In the meantime, I've been having my acupuncturist work on the area when it bothers me most. Too soon to say if it's doing any good, but my fingers are crossed! Happy New Year, lovely! Jen
  4. Mama, Thanks so much for your response. It's amazing to me how helpful it is just to know I'm not alone. Sometimes with this silly thing you really do begin to wonder what you're imagining and what's really there! I have a feeling we'll both be searching for answers on this one for a very long time. But it helps to know it's something more common than I maybe originally thought and that it's just another thing I can chalk up to dysautonomia! All the best to you and yours, Jen
  5. Hi all, I'm very curious to know if any of you have ever experienced pain on one side of your rib cage, sort of leading up into the under arm area. My pain has been there in some form since July (in fact, it was one of the first "symptoms" I had), and it was originally diagnosed as chostochondritis, which my neurologist questions. He seems to think the pain may well be related to the dysautonomia, as many patients have inexplicable pains in their limbs and such. I can go days without feeling anything there and then all of a sudden, just the worst pain imaginable. It hurts to the touch, so it d
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