Discussions By Condition: I cannot get a diagnosis.

no confidence in my doctors or the diagnosis

Posted In: I cannot get a diagnosis. 7 Replies
  • Posted By: s240185
  • February 2, 2008
  • 07:48 AM

In september i began to get a stiffness in both my hips which after a few weeks turned to a dull aching, I would run on average 3 fevers or more a day i went to the doctors they did a general blood count and toldme i was fine and not to be concerned. Within a few weeks my lymph nodes where swollen and i had gone from having chronic insomnia for 5 years to sleeping more then 12 hours a nigh and needing atleast a 3 hour nap later in the afternoon i also have flu symptoms. I continued going to my doctors where they did thyroid and hormone tests and then diagnosed me with chronic fatigue syndome caused by stress. I knew that i had been in contact with EBV for 3 weeks and was begging the doctors to test me for it but they refused i finally was fed up and demanded the test and i was right i came up with a negative positive EBV test ( meaning i had EBV but it was no longer active in my systems so therefore should have no symptoms). The last month my symptoms have worsened i have been needing to sleep more and only wake up around lunch time and then another nap at 4:30 in the afternoon because by that time i could fal asleep standing up im so tired. I also have had the pain go from my hips to my thigh bones while i know chronic fatigue does cause pain everywhre i have looked states it is muscles pains not bone and is not localized to specific areas it comes and goes all over the body which is not what i have. In the last two weeks the veins in my legs and arms have become extremely visible while i know this to be a sign of im pretty sure i havent aged that much in two weeks i can see the smallest of veins all through my hands wrists, arms and legs.
I have no confidence in my doctors anymore and i dont think anyone can blame me when i had to force them to perfom a simple blood test to confirm what i thought i had all along. However i think i may have been sick before i got the EBV because the hip pain started at the beginning of sept 2007 and i first came into contact at the end sept brginning of oct 2007 when my ex boyfriend returned from overseas ill.

If anyone has any clues i would appreciate hearing them or even if this is the same experience they have had with chronic fatigue as i have looked at numerous different pages trying to link my symptoms with the symptoms listed and i have more symptoms then whats listed.

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7 Replies:

  • Have you seen a rheumatologist yet? A lot of autoimmune diseases can start off with vague symtoms of joint pain and fatigue. I think you need to be screened for the whole gamut of autoimmune diseases, as well as other things too. The typical rheum patient is a young (20's-40's) female.I am so sorry you are going through this. I spent 8 years undiagnosed and it can really be emotionally draining, especially when doctors keep telling you that nothing is wrong (and you KNOW something is wrong). Whatever you do, do not start letting the doctors tell you that your symptoms are psychosomatic. I fell for that hook, line, and sinker because I have something rare and so all my tests came back negative. So, please do not buy into that- it can get to you and cause a lot of self doubt, making you feel even sicker.I hope you get an answer soon. Stay strong!
    Anonymous 42789 Replies
    • February 2, 2008
    • 08:55 AM
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  • Sounds like it could be Lyme disease of something like it. I have been going through something similar therefore I know how you feel. Don't give up and keep on at the doctors until they find it. Good Luck.
    Adam2953 28 Replies
    • February 2, 2008
    • 06:53 PM
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  • What countries did your boyfriend visit? Did you have any burning or hot feelings in your hips? Is it nerve pain or bone pain?Check Google for homeopathics for your symptoms along with herbs and see if your energy improves. You may be fighting a couple of different viruses..
    Monsterlove 2921 Replies
    • February 2, 2008
    • 07:25 PM
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  • I was tested for inflammatory diseases which came up negative but i will go back and get some more tests cause the last lot of test i was able to get them to do was a month ago and everything has gotten worse since. My mother is a natural therepist so she sent me a heap of different natural remedies to try and make me feel better but they didnt work. My doctor originally tried to say my symptoms where in my head and sent me to a psychologist but he changed his tune when the psychologist sent me back to him with a letter telling him that my symptoms are real. I actually do believe in symptoms being cause by psychological conditions cause i have battled depression and i dont know how many colds and stomach upsets i had during that time but there is a slight difference between a real illness and one cause by psychological conditions which is why i know this isnt. Im trying to be positive but i have this very unsettling feeling about it all and it appears more that i have to demand specific tests from doctors because other wise they wont do them but i dont have the energy or time to really find out about symptoms of illnesses and tests required. I do know that whtever it is isnt cured by antibiotics because i had broken a tooth and was put on antibiotics before they would remove it only as a precaution. I was put on Flagyl (awful stuff will never take that again) and Amoxil (pretty common antibiotic for most infections) and they prevented infection in my tooth but did nuthing for anything else. My ex boyfriend travel to Kuala Lumpa. Which is definetly where the EBV came from because he was healthy before he left and started feeling ill about 2 weeks after he returned. I was already having symptoms (hip pain, Fevers) Just a chick note i was also given a HPB test which was negative and there was another test the doctor said the result showed no signs of any cancer's. Im not sure what that test was a wasnt even aware he had thrown that in but maybe someone here knows what that test was. He performed simple blood tests thats all. Im thinking of asking my doc for an xray on my left thigh because the bone pain there is getting extremely bad making walking very painful and i want to make sure there is no damage to my bone. I forgot to mention one symptom which i think is important is what is going on in my sleep im having nightmares but its weird because these type of dreams arnt actually scary but for some reason what wasnt scaring me a year ago is now causing a nightmare reaction. Im also moving around a little too much in my sleep when this started i couldnt stay the night at my ex's (the reason we broke up) i do things like jump up on the bed so i was standing straight up but i was completely asleep by the time we broke up he was so exhausted from keeping an eye on me while i slept. I wake up in the morning and my bed has moved about 6 centremeters from the wall i know im not physically getting up and moving furniture but i think im tossing around so much that it is moving my bed.
    s240185 9 Replies
    • February 3, 2008
    • 00:24 AM
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  • i wrote a long reply to all of your suggestions but it didnt come up cause it logged me out while i was writing it so ill short hand the reply. i have been tested for auto immune diseases = NegativeHPB = NegativeI was tested for some other viruses that im not sure what they were cause he just threw them in to shut me up when i asked him for the EBV test and everything but the EBV was Negative. He mentioned and im not sure what this test was but he mentioned no sings of cancer's on one of the results. Ive also had thyroid, diabetes tests all negative. 1 symptom i forgot to add is my sleep patterns im having dreams that arnt nightmares but im havingtmare response rapid heart rate, sweating and aggitated. The reason my ex and i broke up was because while i was asleep i would jump up on the bed and stand on the bed i would get out of bed (i wouldnt go far) and i would toss and turn so much that he couldnt sleep and ws exhausted by the end of our relationship. I toss and turn so much that my bed has moved away from the wall by morning time and i have to push it back. I have one reoccuring dream that can be classed as a nightmare its where someone is breaking into my house and it is so vivid an actually hear and see what is going on not like seeing it in a dream like actually looking at it. The other dreams however shouldnt be scaring me at all. My ex boyfriend visited Kuala Lumpa. My Mother is a natural therepist and she gave me alot of different natural remedies to help and none of them did anything to help.
    s240185 9 Replies
    • February 3, 2008
    • 00:45 AM
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  • Did you tell your doctor you are sleepwalking? Try here: http://www.nlm.nih.gov/medlineplus/ency/article/000808.htm
    aquila 1263 Replies
    • February 4, 2008
    • 03:58 PM
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  • Sounds like it could be Lyme disease of something like it. I have been going through something similar therefore I know how you feel. Don't give up and keep on at the doctors until they find it. Good Luck.Hi Adam,I kinda have similar symptoms. Can you let me know your diagnosis? I would really appreciate an early reply.Thanks in advance.Wenu
    Anonymous 42789 Replies
    • September 26, 2013
    • 04:35 AM
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