Discussions By Condition: I cannot get a diagnosis.

Lost Medical Records

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: namaste2001
  • March 2, 2011
  • 10:48 PM

I was born with multiple primary immune system deficiencies that were correctly diagnosed in 1955. Over the years, this diagnosis has been confirmed in many ways. As tests became more accurate, they only confirmed the severity of my immune system deficiencies.
I used to work as a consultant on a contract basis. At the end of a one-year contract in South Carolina, Hurricane Hugo Destroyed the clinic that had my most current records.
My next contract was in Sunnyvale, CA. In California, doctors initially had two responses for me.
1. Without any paperwork to prove it, I was never sick.
2. According to their textbooks, people with multiple immune system deficiencies like mine never live past 40 (I was 41 when I arrived in California).
After 10 years of medical neglect, I was forced to go on Social Security Disability. At this point, I finally found a California medical doctor who would humor me and order a few of the relevant tests. Those tests confirmed multiple immune deficiencies. The new angle for California medical doctors was that I must have a starnge type of AIDS. Without paperwork to prove I had this problem since birth, they decided I had developed it after my move to California.
After natural disasters, do many people have experiences like this? I am wide open to suggestions. Many good doctors have tried to help me, but after ten years of neglect, I have a wide array of secondary health problems that are likely to be permanent at this point. Most doctors go out of their way to block coverage of Medicare and Medi-Cal for my needs, so those doctors who try to help have their hands tied.
I think I have tried everything because so many people tried to help me, but I remain open to any ideas to break through my lack of adequate paperwork. Everything I need can be confirmed by objective tests, except the fact this is a problem since birth. This doe afect the treatment approach, so it matters.

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