Discussions By Condition: I cannot get a diagnosis.

It has been 8 years and nothing... Please share your ideas

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: marechig
  • October 27, 2008
  • 04:18 AM

I am 25; I have been dealing with an annoying and recently painful eye movement condition. It is only when I look up; my left eye stays straight and my right goes up. I can strain my left eye to "pop" up but as of 2 or 3 months ago it has become very painful. Double vision is also a problem as well. Physicians that I have spoken to have ruled out a "lazy eye" because it started when I was about 17. It has become increasingly worse through the years. If it was just the eye movement issue I would not be as concerned however I also live with 24/7 vertigo, zap like sensations in my head (I have never been on any neurological or psychological medication), severe joint pain, muscle weakness, and sciatica. I once was an athlete but cannot exercise any longer because of the amount of pain I am in. My joints will be stiff in the morning but as the day progresses I get weaker and I am unable to move. My ANA levels came out negative; my acetylcholine test came out negative for Myasthenia Gravis. My blood work was normal with the exception of a high white count (which is not uncommon). I had an MRI and some benign growths were found as well as some scaring but my neurologist would not test for anything else. The pain and the muscle weakness esp in my eye has become worse everyday and every doctor thinks I am faking. I still work, go to grad school but it effects everything I do.

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2 Replies:

  • Have you been tested for neurofibromatosis? Try here: https://www.ctf.org/about-nf/what-is-nf/menu-id
    aquila 1263 Replies
    • October 27, 2008
    • 04:10 PM
    • 0
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  • Have infections and viruses been tested for and ruled out ? Have they ruled out MS? Many of your symptoms sound like many people with tick born or mycroplasma bacteria. Check out www.lymenet.org/ and do a search there. Best Wishes~~JerseyLymie
    Anonymous 42789 Replies
    • October 28, 2008
    • 11:51 AM
    • 0
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