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  • Ehlers danlos syndrome, my long lost answer?

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    Old 10-31-2013, 11:43 PM   #1
    mecswim
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    Join Date: Nov 2012
    Location: sunnyvale
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    Ehlers danlos syndrome, my long lost answer?

    I just switched health insurance to kaiser and bless them they are dealing with a handful. In the past 8 years I have had many medical problems that all seem to just appear.

    Broken bones, way too many to list
    Sprains if everything
    Physical therapy for shoulder, finger, wrist, knees, ankles, back, hip
    Pericarditis
    Acute glomerulonephritis
    Horrible balance
    Episodes if dizziness
    Headaches
    Jaw pain, sublaxed (spelling?)
    Fast heart rate
    Gastro problems
    Bruise easily and last forever, my legs still have bruises from over a year ago!
    Overcrowding bottoms teeth
    Gums bleed easily
    Eyesight worsening
    Osteoarthritis
    Extreme fatigue
    Feet go purple when standing

    So I have been in severe pain in my neck it spread to my head, shoulders, then it hurt to breathe now it radiates to my chest. So I saw my new doctor who was baffled and told me so, but said he would research things for me. Then I showed him my shoulder and how I can pull it out of place just while sitting there with no pulling from my other hand. He said that was really abnormal. Mention ehlers danlos syndrome but under his breath. Asked me to do other things with my joints and apparently they are all hypermobile. He said he would talk to specialists and needed to run other tests to rule things out ( found out I have pernicious anemia) but this ehlers danlos syndrome is looking more likely.

    What do you guys think?

    I am deteriorating quite rapidly right now and trying to avoid the hospital.

    I've tried talking to my mom about it but she gets mad.

    How did this dr who has seen me twice come up with this, when my old dr saw me for a bunch if things and it never crossed his mind?

    Any info would help. 24 year old female

     
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    Old 11-20-2013, 08:56 AM   #2
    Frayed Silence
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    Join Date: Jun 2013
    Location: UK
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    Re: Ehlers danlos syndrome, my long lost answer?

    Hi mecswim

    I feel for you. I too have various symptoms similar to you, including teeth overcrowding, arthritic joints, bad eyesight - short sight -4 dioptres. I have been given a diagnosis of nonspecific Ehlers Danlos but they do not know what type, hence the nonspecific. I have had a skin biopsy which was inconclusive and am hoping to see a geneticist to find out properly what is going on.

    I recommend you see a geneticist if you have not been referred to one already.

    It could possibly be Ehlers Danlos but a geneticist would be the best to find out and diagnose it or even something else, as I am also suspected to have a neurological condition too.

    Hope this helps, if not I apologise for not being much help.

    Best wishes

     
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    Old 06-08-2014, 09:27 AM   #3
    moeglein
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    Join Date: Jun 2014
    Location: Ashland
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    Re: Ehlers danlos syndrome, my long lost answer?

    Hi Mecswim,

    Welcome to the club! I agree with FrayedSilence that a genetecist is a good place to start. Hopefully, KP can get you to a good one, who is interested in such things. In the meantime, you may find it helpful to take the 23andme test. (It can be a time sink, but a nice distraction from the pain.) Using the 23andme results, I've been pretty much able to self-diagnosis and keep the doctors playing catch-up.

    I'll post about my case in a short while. I appreciate that your shared about your own situation.

     
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