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Old 09-02-2012, 11:15 PM   #1
KimBokor KimBokor is offline
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Join Date: Sep 2012
Location: Green River, Wyoming
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Exclamation Years with no diagnosis, several tests, sever pain HELP!!!(long post)

My husband is 25 years old this month. In 2008 he began having muscle pain and fatigue and began seeing doctors. DNA tests show nothing, multiple other blood tests show nothing, MRI and CT Scans show "slightly enlarged thymus" (doctors claim that is unrelated and not a problem), muscle biopsy of bicep muscle shows INTERNAL NUCLEI (doctors say it doesn't show a conclusive diagnosis), EMG shows some myopathy (again, doctors claim not severe enough for a conclusive diagnosis).
He has severe muscle pain all the time, no relief. When he exerts himself it does get worse, and he fatigues quickly. MS and myasthenia have essentially been ruled out (I don't trust anything at this point). Finally after two years of seeing a neurologist at the University of Utah hospital in salt lake city (a 3 hour drive for us) they prescribed lyrica to see if it would help with his pain and it did SOME at first, but little now. Everyday his pain is increasing. He has an appointment with a rheumatologist on Sept 28, 2012, but his neurologists don't think it will yield any answers. His physical exams at every appointment (push doc's arm away, pull it, squeeze etc etc) all come back fine. He is strong. He has nearly zero body fat naturally, never works out and is solid muscle but thin at around 5'9" 147lbs.

ANY help regarding a diagnosis would be greatly appreciated. We honestly don't know how much longer he can handle this pain, he is missing work sometimes and struggles daily at work with this pain and fatigue. He cannot play with our son (and I just found out I'm pregnant with child #2), he can only go to work and come home and rest (not his personality, we have been together since 2003 before these problems began). Outwardly, he seems fine. And the only real clue has been the muscle biopsy. His neurologists will probably try to refer him to the Mayo Clinic in Arizona depending on the rheumatologist appointment this month, but we aren't sure when we will be able to go. Along with all of this, I currently have a 4 inch blood clot in my arm, my other was just diagnosed with cancer, and I just found out I'm pregnant so the stress and medical bills are really adding up and we need answers NOW.

I apologize for the length of this post, but there's a lot of info to get out.
And I appreciate any help, referrals, etc at all. Thank you- Kim

 
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