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  • Two year long mystery. Maybe someone can shed some light.

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    Old 06-07-2014, 12:14 PM   #1
    Brad521
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    Two year long mystery. Maybe someone can shed some light.

    Hi all,
    So my two doctors are baffled as to a very slow, degenerative condition that has just gotten worse over the past two years. I'm wondering if anyone here can sympathize/offer some kind of advice or suggestion as to what I can test for next.

    It started with constant head pressure, back of my head, right side. Started two years ago and I noticed it after swimming. At times it would 'crawl' to the top of my head, or migrate down to my ear and the back of my neck. Some 'floaters' in my eyes when I look to the corners of my vision. Over the year, the pressure got very slowly worse. No pain at all - none - just pressure. Then, one day on the way to a class I am taking, I got a kind of 'attack' of sorts - out of nowhere, got very dizzy, started trembling, and my balance went out completely. I felt like I was going to die. It eventually went away, and I went home. For the next three or four days, I felt extremely dizzy. From there, my balance and walking started to falter. I started getting upper and lower back pains.

    Fast forward to six months ago. The pressure is mostly localized to a 'spot', again same place, right side of the back of my head. It's gotten so bad that I 'scratch' at it and its caused a small bald spot. Walking has slowly gotten more difficult, and my balance sometimes is completely off. About a month ago, I found that rarely my motor skills suffer, and I experience constant pain in my lower/upper back. I woke up a week ago with extreme pain in my lower back that wouldn't go away for hours. Sometimes, it's hard moving my hands in certain ways but again this seems to come in 'attacks' or 'waves'. My ear, sinuses and neck on my right side also feel 'full' a lot of the time.

    Does this sound like anything?
    I have had the following tests: Brain CT scan, Brain MRI, Abdominal Ultrasound, Sinus/Ear CT scan, and a ton of bloodwork.

    Bloodwork showed:
    - High iron (Almost double the high end of normal)
    - Very slightly low creatinine (like .1 lower)
    - High MCH
    - Slightly elevated liver enzymes


    Everything else was normal. I know this is quite the stumper for my docs, just wondering if it sounds like anything to anyone. It's a long shot, but oh well!

     
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    Old 11-20-2014, 08:52 AM   #2
    yayagirl
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    Re: Two year long mystery. Maybe someone can shed some light.

    Brad

    Your blood work appears to be hemochromatosis, which I have. Don't expect doctors to understand this. You might need a specialist or a teaching hospital like the Mayo clinic.

    - High iron (Almost double the high end of normal)
    - Very slightly low creatinine (like .1 lower)
    - High MCH
    - Slightly elevated liver enzymes



    It's a very serious condition. The best and easiest way to get rid of iron is to never use cast iron cookware for any reason (iron leaches into the food) and to give blood as many times a year as allowed.

    I have to pay to get blood removed because I have Hep. C. The excess iron is very destructive to vital organs, and causes heaviness and pain in mucles and joints, esp the legs. My skin of my lower legs turned brown from excess iron.

    Please let me know what you find out.

    Last edited by Administrator; 01-24-2019 at 11:07 AM.

     
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