Discussions By Condition: I cannot get a diagnosis.

many years of illness and pain

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • November 23, 2007
  • 10:14 AM

I keep a journal of all my treatments and symptoms. Over three years ago I came down with:

flu like symptoms
lymp glands that were tender and swollen glands on the back of my head.
I had sever neck pain and could barely move my neck.
I had sever joint pain in my right elbow and left ankle and knee. I thought I had broken my ankle and had x rays taken.
I could not remeber anything
I could not concentrate or even read a book. I used to love reading.
It hurt my foot to drive a car. I was bed ridden
My doctor told me I had a muscle spasm in my neck and gave me relaxants. I requested tests for lupus, RA and all were negative. I requested tests to lyme that came back negative. No one wanted to treat me The pain moved from one location to another and would settle in there for about a year before moving to yet another location. I have night sweets, fatique, fractionated sleep issues (two hours sleep, two hours up, two hours sleep.....) I have ringing in my ears, tremors, and so on...............

A year and a half ago I started to have back pain, left flank side. I had a colonoscopy but doc said that was not causing the pain. I just kept waiting for the pain to move on as before. It never did and I am now in terrible pain, I have been back to the gastro doc who sent me to a gyn who sent back to the gastro doc. Now he wants me to go to the urologist, I have had xrays, cts, MRI, blood tests. I have no where else to go. This pain is not joint pain this time, it is different.

I have been on antibiotics for 3 years and just got off of them. They could only help to a point with my "auto-immune disease". I had doctors who did not want to treat me they said I was depressed. WHO WOULDN'T BE WHEN THEY HAVE BEEN IN PAIN AND SICK FOR YEARS?????

IS THERE A PLACE FOR THE PATIENTS WHO ARE NOT WANTED?

Maybe in heaven......

Good luck to all of you

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5 Replies:

  • Have you had your thyroid ANTIBODIES checked? You may have something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis. There are 2 problems in getting a diagnosis: 1) most doctors have never heard of it 2) most patients have normal thyroid hormone levels and since antibodies are usually checked ONLY AFTER the thryoid hormone levels are abnormal, they are never tested for it.It can produce a lot of different sympoms and each case looks different. It is worth looking into, however, since it is treatable with steroids.I hope you find your answer (whatever it turns out to be) soon. The worst part of being sick can sometimes be not knowing what it is.Best Wishes!!!
    Anonymous 42789 Replies
    • November 26, 2007
    • 09:44 PM
    • 0
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  • Have you ever been treated with steroids?
    sassy_pants 2 Replies
    • November 26, 2007
    • 09:47 PM
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  • Yes, I was diagnosed in April and went on steroids in May- a pulse and taper of prednisone. In June I was finally able to get in to an endocrinologist and she put me on Levoxyl to supress my thyroid. After the steroids, the fatigue in my legs lifted, and i no longer needed my cane, which I was using to keep my balance. After the levoxyl, I felt even better. I have relapsed since then and just completed another pulse of steroids. I feel very fortunate to finally know what my illness is called- I spent years being told I was just depressed or had psychosomatic illness or chronic fatigue syndrome. Sometimes I wonder if chronic fatigue syndrome isn't actually hashimoto's encephalopathy. Hmmm.Good Luck to you. Try not to get discouraged. Keep looking until you have an answer.
    Anonymous 42789 Replies
    • November 27, 2007
    • 01:50 AM
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  • I believe a portion of your problem is "gout". Try ordering "goutrol" online when you get the foot/joint pains and see if that helps any. I'd probably change doctors.
    Monsterlove 2921 Replies
    • November 27, 2007
    • 02:55 AM
    • 0
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  • Have you had your thyroid ANTIBODIES checked? You may have something called Hashimoto's Encephalopathy. It is a rare complication of autoimmune thyroiditis. There are 2 problems in getting a diagnosis: 1) most doctors have never heard of it 2) most patients have normal thyroid hormone levels and since antibodies are usually checked ONLY AFTER the thryoid hormone levels are abnormal, they are never tested for it.It can produce a lot of different sympoms and each case looks different. It is worth looking into, however, since it is treatable with steroids.I hope you find your answer (whatever it turns out to be) soon. The worst part of being sick can sometimes be not knowing what it is.Best Wishes!!!That is probably the one test that hasn't been performed! Thanks.....
    Anonymous 42789 Replies
    • November 30, 2007
    • 06:42 AM
    • 0
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