Pathology and laboratory medicine

pathology, laboratory medicine, clinical pathology laboratories, pathology definition, clinical pathology, pathology laboratory, pathology report, human pathology, lab medicine

Ehlers Danlos Syndrome

Information, please, on EDS, especially Type I.  Any hope?  Any research in the
pipeline on this genetic connective tissue disease?  Nineteen year old
grand-daughter in CA, recently diagnosed is trying to manage her pain, joint
dislocations & tissue bleeds with natural remedies, meditation etc.  Not much
to fight 24 hour a day pain…

.
posted by admin in Uncategorized and have Comments (2)

2 Responses to “Ehlers Danlos Syndrome”

  1. admin says:

    Check this Kansas University Medical Center site for all kinds of genetic
    info and links:

    http://www.kumc.edu/gec/geneinfo.html

  2. admin says:

    In article <1998071320281200.QAA06…@ladder03.news.aol.com>,
      jrager4…@aol.com (JRager4580) wrote:

    > Information, please, on EDS, especially Type I.  Any hope?  Any research in
    the
    > pipeline on this genetic connective tissue disease?  Nineteen year old
    > grand-daughter in CA, recently diagnosed is trying to manage her pain, joint
    > dislocations & tissue bleeds with natural remedies, meditation etc.  Not much
    > to fight 24 hour a day pain…

    > Hi. I have eds. I have terrible leg aches, so much so that at times I can

    barely walk. I also suffer from constant migraines. Like your granddaughter,
    I hate taking a bunch of medicines. I was  having to take 800mg motrin per
    day to make the pain subside enough to walk. I had always heard that a person
    should stay away from caffeine if you have migraines or fibromyalgia  (one
    doctor thinks I have that too, but I think the pain is just another eds
    symptom). Well, one day I just said to hell with it and bought some
    cuppichino drinks at Costco. I drank one a day for a few days and was
    astounded to find that it took my leg pain completely away and made the
    headaches subside to a tolerable level. I experimented going on and off the
    caffeine to make sure it was really having an affect and wasn’t coincidental.
     It was miraculous. I didn’t need any motrin at all to get through the day. I
    spoke to my doctor and we came to the conclusion that the eds must be
    affecting my curculatory system. The caffeine is dialating my blood vessels
    enough to ease the pain. I’ve been drinking a Starbucks cold cuppichino drink
    every morning. (Regular hot coffee doesn’t help for some reason. )Although I
    don’t really like the idea of using caffeine, I consider it a drug, it’s
    milder than the other stuff the doctors want to put me on. One drawback
    though, I’ve been using it for a few months and my body is building up a
    tolerance to the caffeine. It’s not helping as much as it was in the
    beginning.It did give me valuable info to use when I decide to start taking
    prescribed medication, I’ll have a good idea of which types to try. I have no
    idea if the eds affects your grand daughters blood vessels in the same way it
    does mine,( it may do the opposite, eds is weird) but it’s a relatively
    harmless thing to try to see if it helps.  Remember to tell her that it took
    a few days for the affect to start. If she likes cuppichino, tell her to try
    it.I’m sorry this is so long, but I’ve found that eds patients tend to learn
    more from each other than from the doctors because there isn’t much research
    being done.I wish your grand daughter luck.

    —–== Posted via Deja News, The Leader in Internet Discussion ==—–
    http://www.dejanews.com/rg_mkgrp.xp   Create Your Own Free Member Forum