Discussions By Condition: I cannot get a diagnosis.

Can someone please, please help me put the pieces of the puzzle together??

Posted In: I cannot get a diagnosis. 8 Replies
  • Posted By: qwertyuiop123
  • November 21, 2008
  • 11:49 PM

I have:

kyphosis
degenerative arthritis in my L4-S1 vertebrae
add
ibs
lax joints- though not hypermobile, just real lax ligaments actually, not the connective tissue or whatever, but supposedly the cause of my joint pain.
Raynaud's


I'm frustrated because I was now told after seeing a doctor at the adolescent clinic of seattle children's hospital that she thinks I have childhood fibromyalgia, or reflex neurovascular dystrophy. So, I just happen to have a fifth medical condition, none of which have much to do with each other, other than maybe lax joints and the arthritis in my back. Why can't ONE doctor look at the whole picture. If I had fibromyalgia wouldn't I have unexplained extreme pain, as opposed to just the joint pain from my dumb ligaments?

She is ordering an electromyography, since my complaint was muscle weakness, not any of the above things, but I'm just so frustrated, I know there has to be a bigger picture here. Can anyone help me find it???

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8 Replies:

  • I forgot to mention negative ana.
    qwertyuiop123 453 Replies
    • November 21, 2008
    • 11:54 PM
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  • I have:If I had fibromyalgia wouldn't I have unexplained extreme pain, as opposed to just the joint pain from my dumb ligaments? yes.. you are correct there.. it truely sounds like that doctor is using fibromyalgia as a wastebasket diagnoses and telling you you have that cause she dont have a clue what you have. You dont even sound like you have fibro!! as fibro causes widespread pain.. not just joint pain. "According to the American College of Rheumatology fibromyalgia is not a diagnosis of exclusion" Fibro should NEVER be a waste basket diagnoses that some uneducated doctors about it use. I suggest you read and copy the following and take it to your next doctors visit to stop the bullcrap diagnosing she's currently giving you. It's on how fibromyalgia is diagnosed and where the fibro tender points are which are used for diagnoses. http://www.prohealth.com/fibromyalgia/basics.cfm?anchorid=24&#-24
    taniaaust1 2267 Replies
    • November 22, 2008
    • 04:29 AM
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  • if the kyphosis was present from birth then it wasn't caused by lax joints, but couldn't the kyphosis have caused the arthiritis. if so then it is all part of a syndrome. ibs is so common that it's hard to say if it is related. i have ibs and i don't think it is related to my thyroid though i do think it is related to my mental illness. no one has offically told me that i have reynards but my hands and feet are always cold and my cousin has reynards so it seems likely that i have it too. i always thought it might relate to the fact that we are both very, very thin. so all of your symptoms may not be related, even though it seems like they must. i hate to say, you may just be unlucky.
    emmarene 34 Replies
    • November 22, 2008
    • 08:07 AM
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  • Thanks for the input, I'm seventeen and only found out about the kyphosis and arthritis a few months ago, and the lax joints including slightly hypermobile elbows and extremely loose kneecaps a few days ago. I hate that I have been diagnosed with the ibs and childhood fibromyalgia or whatever, for the reason s you pointed out tania, they are basically a doctor's last resort to give a patient's symptoms a name. There's no way to disprove it, so the doctor can't be wrong, unless of course you get lucky enough to receive a much more accurate diagnosis. I just want to know why my muscles get so weak so easily, that is my biggest concern, and if I find the link between my other conditions in the process I would be thrilled, but this seems unlikely. I am holding out a lot of hope for the electromyography, hopefully it will give the doctors some more info.
    qwertyuiop123 453 Replies
    • November 22, 2008
    • 09:39 PM
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  • they are basically a doctor's last resort to give a patient's symptoms a name. There's no way to disprove it, so the doctor can't be wrong, . The doctor can be easily proved that he could be wrong by presenting him with how FM is properly diagnosed.. eg the info on that link i gave.. if he hasnt done the proper FM trigger point testing.. well that proves he's just guessing. Tell him you want a second opinion if he really thinks you have FM and want to be sent to someone who will do the proper testing procedure for it the way it's supposed to be diagnosed....................... Things like celiac disease could cause IBS like symptoms and joint pain. Have you had celiac disease ruled out? http://www.mayoclinic.com/health/celiac-disease/DS00319/DSECTION=symptoms http://www.celiac.com/articles/85/1/Arthritis-and-Celiac-Disease/Page1.html
    taniaaust1 2267 Replies
    • November 23, 2008
    • 00:41 AM
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  • Thanks for the input, I'm seventeen and only found out about the kyphosis and arthritis a few months ago, and the lax joints including slightly hypermobile elbows and extremely loose kneecaps a few days ago. I hate that I have been diagnosed with the ibs and childhood fibromyalgia or whatever, for the reason s you pointed out tania, they are basically a doctor's last resort to give a patient's symptoms a name. There's no way to disprove it, so the doctor can't be wrong, unless of course you get lucky enough to receive a much more accurate diagnosis. I just want to know why my muscles get so weak so easily, that is my biggest concern, and if I find the link between my other conditions in the process I would be thrilled, but this seems unlikely. I am holding out a lot of hope for the electromyography, hopefully it will give the doctors some more info. have you been checked for A disease with features of cutis laxa and Ehlers-Danlos syndrome
    aremerald 2 Replies
    • November 23, 2008
    • 01:11 AM
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  • The only problem is the doctor I saw specializes in childhood fibromyalgia and chronic fatigue. and she did push on the trigger points, some hurt, but most didn't. And for the most part its the ibs that makes me angry, as my mom also has it and frequently wakes up in the night with stomach pain. A doctor told her this was not characteristic of ibs, but after a few tests decided it was ibs after all. I have been tested for celiac, the blood test, twice both negative. I am wondering how accurate that test is? I also wanted a breath test for glucose sensitivity or lactose intolerance, but the doctor felt that was unnecessary, she said my symptoms wouldn't come and go like they do, which I agree about fructose, but since I don't drink milk and sporadically consume ice cream, cheese etc, I think I am going to start keeping track of what I eat and when my stomach hurts.
    qwertyuiop123 453 Replies
    • November 23, 2008
    • 02:03 AM
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  • Hi there, You are gluten and dairy intolerant. You should follow gluten and dairy free eating plan for life.Metabolic typing will be very useful to create a diet that will decrease the acidity in the body.There is a cellular memory of syphilis (not an infection!). It leads to self destructive tendency in the body. It should be cured with homeopathic remedies.Take the homeopathic remedy calcarea fluorica 200 c - twice a day under tongue 15 min before meal for 1 month. It will help a lot.Take the homeopathic remedy syphilinum 10 m - once a week for 3 months to cure the cellular memory of syphilis.You can contact me on skype for an assessment.My skype name is drbulatov. Love, peace and joy, Dr B
    Anonymous 42789 Replies
    • November 23, 2008
    • 02:02 PM
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