Discussions By Condition: I cannot get a diagnosis.

Medical Mystery - Am I alone?

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: callctr2000
  • October 26, 2008
  • 06:56 PM

It is great to have a forum like this. I have been ill and off work for almost 4 months now and have seen every top specialist about my illness, with no diagnoses. (Head & Spine MRI, Autoimmune tests, Xrays, CT scans, Blood of all kinds) My doctor does not know what else to test for.

Over the last three years I have had 3 episodes of extreme muscle aches in my legs and buttock area reaching into my groin. With this came extreme fatigue and each episode only lasted 2 - 3 weeks and went away as quickly as it came on. I went months and even 1.5 years with no symptoms.

This June I had the same leg and fatigue symptoms, except one day the symptoms spread to my arms as well. A month later in a span of 4 hours numbness and tingling went up my torso and into my face. There is burning sensation in my arms and back of my neck, numbness in my face and still the extreme achy feeling in my legs. During this whole time I get waves of extreme weakness where I get shaky and almost feel like I may pass out. Like a low blood sugar feeling that lasts from 30 minutes to sometimes 4 hours. But every medical test they perform comes back perfect.

I have been treating the burning and numbness with Gabapentin and am exploring every holistic medical option there is. So far - no help and no diagnoses.

Taking a chance that someone else my know what to do next or has heard of something similar.

Thanks for reading!

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4 Replies:

  • There are seperate tests for autoimmune disease besides the normal ANA. Mine came out normal but they tested my Acetylcholine levels. Do you have weakness after doing physical work? If so, I would ask your doctor about Myasthenia Gravis. Also the groin pain could be Ryder's Syndrome, which is a rare autoimmune disease as well. Good luck!
    marechig 1 Replies
    • October 27, 2008
    • 04:30 AM
    • 0
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  • Thank you for the advice. I will follow up on all. I was tested for Lyme's disease, but after reading the attached articles I will definitely speak with my physician again. It is nice to have people on here who care and try to help...much appreciated.
    callctr2000 3 Replies
    • October 27, 2008
    • 06:23 AM
    • 0
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  • Have you been looked at for celiac disease? http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/
    aquila 1,263 Replies
    • October 27, 2008
    • 04:05 PM
    • 0
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  • No, I have not. The symptoms don't seem to be 100% in line, but it does say that they can appear differently for adults specifically. I will ask my Dr. about this as well. Thanks for the tip - much appreciated.
    callctr2000 3 Replies
    • October 28, 2008
    • 05:51 AM
    • 0
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