1. My "DIY DIAGNOSIS" confirmed last night....
    Amber Lynn Amber Lynn United States says:
    June 5, 2013 at 10:55 PM

    Thank you for this Jon...
    I can't wait to read everything else you have written.  I, thanks to the information available on the internet , had a "DIY Diagnosis"as well.  Finally, after over 45 doctors, being a full time patient for the past 11 months, listening to doctors say"depression is real", I have FOUGHT to be an informed patient and have held back nothing to fight for the tests I have felt I needed.  After normal GH and IGF-1 tests from my primary and several other docs (including an endo) I demanded the GH glucose tolerance test.  When I read the results I knew it confirmed acromegaly. However my doctor said she wasn't sure and had to do some more research.
    We finally met face to face last night.  And when she told  me "You were right", I said "I know".  
    Let the journey begin.  I'm so grateful to you for all that you have written.... I have my printer and highlighter ready. I'm feeling numb, sad, afraid, hopeful, heartbroken, all of those things on repeat. BUT ready to now fight to get the proper care that I need. I live in Philadelphia PA.  If there are any super star endos here I'd love to know.
    Kind Regards,
    Amber Lynn

    Reply
    • Dear Amber Lynn...
      Jon Danzig Jon Danzig United Kingdom says:
      June 9, 2013 at 4:24 PM

      Dear Amber Lynn, I am pleased you found my writing helpful, but profoundly disappointed and alarmed by the awful journey you have had to endure in reaching the correct diagnosis.

      Well done for being so strong and persevering. I can understand this has been very upsetting, sad and frustrating for you.

      When you feel able, I think it will be helpful if you could also write about your experiences too.  As you have discovered, patient stories can be empowering for fellow patients, and also serve as an important source of knowledge for doctors.

      Please also feel free to write to me personally. I am interested to know how you fare and the treatment options you are offered, and I would like to keep in contact. Please continue to be an expert patient, and I hope you will be feeling better soon.

      Best wishes, Jon Danzig

      Reply
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