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HELP! I need a doctor who specializes directly with Cushing's I already see to endo at OHSU, but still no help told me it is too rare to have



I am looking for information about doctors wh specialize in Cushing's syndrome in Portland, OR or somewhere around Oregon or Washington. I am 99.99% sure I have Cyclical Cushing's and have had it for the last 16 years. I currently have to endocrinologists at OHSU even though they are great physicians they they are hesitant on diagnosing me with it they want me to have Gastric Bypass, they keep saying Cyclical Cushing's is too rare for me to have. I have had 3 episodes/cycles since I was 16 ... I match pretty much every and I mean every symptom of Cushing's I even have had two high 24 hour Urine Cortisol's, but they did not feel that it is enough to give me the diagnosis. I took in before and after pictures to show the progression of this over the years, I am currently on 700 + units of insulin a day(and my sugar levels still stay between 350-400 daily), 2550mg a day of metfomin, I have developed hypertension, low potassium, an extremely distended stomach (which is really hard on top) my legs and arms are thin, my face is ver, very round and gets red, I have no periods, My muscles are killing me along with my joints and the hump on the back of my neck between my shoulders is huge and is killing me, My ribs are hurting, I have insomnia, panic attacks almost daily, large pink/purple stretch marks, severe edema, severe daytime fatigue, forgetfulness, losing some cognitive skills, a continuous sinus headache, The pain is becoming unbearable in my joints, acne, losing hair, lots of facial hair on cheeks and chin, I am urinating non-stop, my muscles are extremely weak and it is becoming dfficult to walk because my ankles, knees and hips hurt so bad. I am having a hard time walking especially when it's on an incline. I keep stumbling and losing balance(this is recent). Each episode is worse then the one prior... This is my 3rd bout with this and it is awful... I am only 32 y/o and my doctors won't listen... my Endo's at OHSU keep saying eat less and will not refer me to another endo in the office who specializes in this. I have been emailing them, but now they won't even reply, they keep telling me to excersize more, but I can't because it is so painful and I am so tired. Can someone please tell me of other doctors they have seen that heloped them get a final diagnosis? I did have dexamethsone, and ACTH don, but they were normal... I really want an MRI, ultrsound and CAT scan done. I have great insurance, but I feel like I am getting 3rd world care and being passed of as a crazy person.


Thank you for any help!

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