Discussions By Condition: I cannot get a diagnosis.

Help. Positive for factor v Leiden, but what else then?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: Anonymous
  • September 20, 2010
  • 07:08 PM

hoping I might get some good advice on how to deal with all of what I have going on. Everything started in June when I was admitted to the hospital for a heart attack, blood tests clearly showed heart damage but none of the doctors I saw seemed to have any idea what was going on. I ended up following up with the cardiologist that I had been referred to and asked to be checked for factor v Leiden because my dad has it. At the time I had no idea what it was and I had no idea my dad had it, he had recommended I get tested because he had already had stints put in his heart at that point for clotting in his heart... That's about what I knew... My tests came back positive for factor v Leiden and I still wasn't getting answers as to what was going on, so I threw a fit and demanded to see all the results to the tests they had taken in the hospital that had never once been discussed with me... The print outs of my chart read that I have a "cerebral sinus thrombosis" which I'm still unsure as to what that is, and then they noted that I have numerous "cysts and nodules" in different areas of my chest and two in one lung... I've smoked and took birth control since I was 13 years old but this was without knowing of any medical issues, I've always been very healthy and when all of this began to occur I was in great health, I weighed 132 pounds, had abs and a drive for working out and eating healthy... The doctors are all telling me that these random "nodules and cysts" are of no importance and that all I can do is quit smoking, take an aspirin a day and lose some weight (I've gained around 65 lbs since this all began), but I feel the weight has gotten beyond my control... At this point my body is fighting me every step of the way, I get random bruises if I put pressure on areas of my body, particularly my elbows and hips, I have terrible headaches, with pin ****k sensations on one side, I feel like my skin is crawling half the time, I lose feeling in whatever side I sleep on at night and wakeup anywhere between every 20 min to an hour and have to sit up and move around to get the blood flowing, I lose vision in my left eye, usually from being tired or stressed, sometimes it just happens for no reason...my fingertips almost always feel dead, my toes turn deep purple or ghost white, sometimes it'll just be one white toe and than they rest will be purple... I am miserably tired all of the time, my periods are irregular, where I will sometimes not get a period for a few months and others I'll get like 4 in a month lasting two days at a time, this has sparked me to take pregnancy tests a few times as I am married and have been taken off the birth control and I've gotten over 15 false positives... I have a hard time waking up when I've fallen into a deep sleep, my husband has literally poored water on me to get me up (because I told him to do it if that's what it took) and it does nothing, and my muscles are always in pain, sometimes so bad I can't walk... And my ankles and wrists swell...and sometimes my face twitches.. And I have had issues on and off with memory loss...now, wanted to try and get some advice from someone who maybe might be able to shed some more light on the issue as my doctors don't seem to think anything is serious... I feel otherwise as at 21 my life has gotten miserable, a year ago I was a happy healthy "teen" and now I just am at a loss as to what to do...

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  • hoping I might get some good advice on how to deal with all of what I have going on. Everything started in June when I was admitted to the hospital for a heart attack, blood tests clearly showed heart damage but none of the doctors I saw seemed to have any idea what was going on. I ended up following up with the cardiologist that I had been referred to and asked to be checked for factor v Leiden because my dad has it. At the time I had no idea what it was and I had no idea my dad had it, he had recommended I get tested because he had already had stints put in his heart at that point for clotting in his heart... That's about what I knew... My tests came back positive for factor v Leiden and I still wasn't getting answers as to what was going on, so I threw a fit and demanded to see all the results to the tests they had taken in the hospital that had never once been discussed with me... The print outs of my chart read that I have a "cerebral sinus thrombosis" which I'm still unsure as to what that is, and then they noted that I have numerous "cysts and nodules" in different areas of my chest and two in one lung... I've smoked and took birth control since I was 13 years old but this was without knowing of any medical issues, I've always been very healthy and when all of this began to occur I was in great health, I weighed 132 pounds, had abs and a drive for working out and eating healthy... The doctors are all telling me that these random "nodules and cysts" are of no importance and that all I can do is quit smoking, take an aspirin a day and lose some weight (I've gained around 65 lbs since this all began), but I feel the weight has gotten beyond my control... At this point my body is fighting me every step of the way, I get random bruises if I put pressure on areas of my body, particularly my elbows and hips, I have terrible headaches, with pin ****k sensations on one side, I feel like my skin is crawling half the time, I lose feeling in whatever side I sleep on at night and wakeup anywhere between every 20 min to an hour and have to sit up and move around to get the blood flowing, I lose vision in my left eye, usually from being tired or stressed, sometimes it just happens for no reason...my fingertips almost always feel dead, my toes turn deep purple or ghost white, sometimes it'll just be one white toe and than they rest will be purple... I am miserably tired all of the time, my periods are irregular, where I will sometimes not get a period for a few months and others I'll get like 4 in a month lasting two days at a time, this has sparked me to take pregnancy tests a few times as I am married and have been taken off the birth control and I've gotten over 15 false positives... I have a hard time waking up when I've fallen into a deep sleep, my husband has literally poored water on me to get me up (because I told him to do it if that's what it took) and it does nothing, and my muscles are always in pain, sometimes so bad I can't walk... And my ankles and wrists swell...and sometimes my face twitches.. And I have had issues on and off with memory loss...now, wanted to try and get some advice from someone who maybe might be able to shed some more light on the issue as my doctors don't seem to think anything is serious... I feel otherwise as at 21 my life has gotten miserable, a year ago I was a happy healthy "teen" and now I just am at a loss as to what to do...I am not a doctor at all but some of the symptoms you listed (vision loss in one eye, headaches) could be attributed to migraines. But they also could be what is called a mini-stroke (Transient Ischemic Attack). I say all this because my husband just recently suffered a TIA. He lost his side vision in his right eye and a bad headache in the top left portion of his head. After many tests they found out he had had a mini-stroke. After a few more tests they were able to locate a formerly undiagnosed hole in his heart.All your other symptoms may or may not be related. Stress over your health will compound symptoms.I'd ask to have an MRI done if you haven't already done so. On your brain.
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