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Everything posted by Sofia

  1. Hello All! Feeling great today just the darn bloody nose, but March is approaching and I will hit my 1 Year Post Op!

    1. MaryO


      Happy upcoming 1 year anniversary, Sofia :)

  2. I don't know exactly where the liver is but I have this weird pain in my back but its not a muscle pain its more inside my body..it flutters and hurts..maybe its my enlarged liver who knows..
  3. I was told I have a fatty liver and just recenly I have an enlarged liver now it went from 2 cm to 21 in 3 months. I've never had this before but since I might have cushing's I'm guessing it's all the things my body is going through. Plus why am I always so hungry??! And for sweets and carbs? It's like I need it to live and I've never been like that. What kind of diet do you suggest I try to just calm my body down from all the carbs and sweets. The cravings are the worse!
  4. Should I get a visual field test done too?

  5. This is sofie, my message below got chopped off in the beginning..my question was..how was your experience with Dr. Fahey in NYC?

  6. I also live in the NYC area and have been endo shopping, well at least one who will keep testing me for cushings and to not dismiss my symptoms like all the others.

    Please let me know how you liked this doctor and if he was helpful with testing for cushings.

    Thanks so much,


  7. DOCTOR CALLED SHE SAID "IM FINE" CAUSE ALL THE TESTS FOR CUSHINGS CAME BACK NORMAL...MIND YOU THIS IS MY FIRST TIME TAKING ANY OF THESE TESTS..i told her that i want to keep checking she specailizes in cushings she cant be that dumb to know that one set of tests is going to tell us yes or no that i have something.. she really needs to head back to school or quit shes a horrible doctor...

  8. i am honestly not really understanding this disease or syndrome basically because i dont see how these tests to catch soo many "high" test results just to get cleared to have something wrong with you when clearly we are showing symptoms. Of all the diseases and syndromes and cancers and infections that people get...this one has only a couple of tests to tell you when you can "finally get treatment"???? Someone please explain this madness!

    1. refundle



      My daughter Allison had an MRI done in Nov. and is was "normal". She has had symptoms, much like yours, for 16 months. It has been hell for her trying to go to school. The weight gain, acne and stretch marks are awful when you are a teenager in high school. Anyway, I finally had enough with the normal tests (she also never had a high) and the doctors telling her she just needs to lose weight, and we went to LA last week to see Dr. F.. He saw an area of "concern...

    2. Sofia


      Im sorry about your daughter I can't even imagine being in high school right now with this I am embaressed to go to the store lately. I was reading about dr f but im all the way in new york...between flight cost and hotel I don't kno if I can even do that right now even tho I would love to see him cause he seems like he is the only one who knows what he's doing. Where did he see the area of concern for your daughter? Mri or the other tests? Good luck to you and your daughter..this...

    3. refundle


      sorry message cut off...on the old MRI that was "normal" we were told that anyway and the MRI from Cedars-Sinai showed 2mm adenoma on the L pit. I am awaiting word when and where her surgery will be. Hopefully, soon enough to regain some normalcy for her senior year..It was pricey to go to LA and I have a multiply handicapped son that I had to leave home with my husband but we had enough. Hopefully you too can find some answers soon. Christina

  9. 24 hr ufc came back normal ....of course...16.7....doing that test again and again and waiting for the saliva and dexamthesone results as well ...ughhh sooooo frustrating!

  10. with all the medical technology..they couldnt find an easier way to test and diagnose cushings?!

  11. Took the 1 mg dexamethasone at midnight...now off to the lab to get my blood drawn. Hope and pray this test will show something!

  12. Cant stop thinking about how my life used to be and how healthy i was..makes my heart break and my soul tear in pieces...

    1. blondie899


      Im in the same boat, it really does suck if you ever need someone to talk to just message me.

    2. Sofia


      thank you so much..i will :) its good to talk to someone who can understand..i feel bad for the people around me that have to watch me complain about being in so much pain...

  13. Is chest pain along with heart palpatations also one of the symptoms of cushings? Is so check that off as one of my new symptoms! :(

  14. Should I get a second opinion on my brain mri results ? The Surgeon who said he didnt see anything also was the same person who said the images werent clear and didnt ask me to retake them. He is well known and has done dozens of pituitary surguries. Should i still get that second opinion??

    1. saberlowe


      Yes, definitely get a second opinion! Dr. McCutcheon is great and will look at it free of charge.

    2. Sofia


      thank you for your advice! I will make an appointment to get the second opinion on my brain mri. The surgeon also said that the images were blurry making me think "well why dont i just retake them if you cant see it clearly!" Yet the surgeon is well known in nyc, and has done thousands of pituitary surgeries so I dont know what to believe anymore. But i will get a second opinion.

  15. I stopped taking my vitamins that I was taking before I was sick because I didnt want them to interfere with any of the tests I was doing. Should I take them still? Will it make a difference testing wise?

  16. New stretch marks showing up in new places-bright red! Going to research new endorcinologists.

  17. Mailed out midnight saliva test....hope hope and pray these results will show high cortisol..my symptoms are getting worse!

  18. Anyone from NYC and know of any endocrinologists that are actually good and want to help find my diagnosis??!!

    1. MaryO


      There are some NY doctors who have helped other patients at http://cushie.info/index.php?option=com_sobi2&catid=16&Itemid=21

    2. Sofia


      thank you mary i will look check out that site. Any help I can get is greatly appreciated.

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