Dear Cushies, (if I have spelling boo boos please over look them, I don’t have the spelling gene)
I would like to say that I was new on my road to a diagnosis, but I am not. I begain to complain to my Dr’s in my 30’s (I am 3 weeks away from 50th B-day) about my symptoms. I have led a very stressful life from the start. No need to go into details, but it has taken a life time to heal from them. One day (it seemed like over night) I felt extreme weakness in my legs and arms.
I begain to have dizzy spells and began to gain weight for no reason. A very strange fatty hump begain to grow at the base of my neck and my periods began to disappear. I don’t mean I missed them, the just began to become very light and last only one or two days. And I became infertile. Happily I had two children and I was alright with the news.
I started to have high blood pressure (sometimes, it goes up and down for no reason). My Dr. said I must be forgetting my meds. I DO NOT! She (I have two Dr’s same office, one male other female) gave one of what was to be hundreds of eyebrow raises that mean your lying to yourself, if not coming right out and saying it. In the begining I had all my weight bulging around my middle. People used to say “you have such nice legs” (for a fat person).
But after so many years of extreme waekness in legs and arms and not being able to be as active as I used to love to be, fat begain to advance over the rest of my body as well. My Dr’s kept telling me to diet and stay away from sweets. No matter how hard I would tell them that I don’t eat many sweets (I like a goodie now and then, but I never have them around as a rule) they would tell me that I had to be pigging out and I was just in denial. I can’t describe the frustration and helplessness I feel when no one belives what I’m saying.
Finally My male Dr. believed me enough or just wanted me to be quiet about it and sent me to the Endocrinologist. I had to wait for months to get there. I had been looking up my symptoms on line and Cushings came up over and over again. I cried when I read all of my sysmptoms facing me from the screen. I have everyone!
I have lost over half of my hair, mostly on top. I have purple marks on my side, I have blured vision, I have to have my glasses changed every two years and I still can’t see. I bruse easily and I heal very, very slowly. I had a hernia operation and the wound opened up and it took 5 months to close. I have the most embarassing hair on my face, I can grow a full beard, and I have a thick hair line on my belly. I lactated for 15 years after the birth of my son. For no reason. I live with anxiety every day of my life. I have off and on depression. I have tried every class of anti-depressent with bad side effects. I will never use them again. I can’t sleep and I’m so tired. I can’t raise my arms for more than a minute before they literally fall down on their own. My blood sugar is up a tiny bit but as i said, I don’t eat many sweets and there is NO diabetes in my family at all.
At last I found the answer I have been seeking for for years. And now I could have some hope. I went to my first Endo appiontment and told the Dr. that I was at the end of my hope and I was preying for his help. After he examind me and took my history he told me he believed that I had Cushings too. At last someone who believed me, I cried buckets. He ordered a AM Crtisol and a 24 hour urine. And he told me to come back in 3 months! In the mean time the AM cortisol came back to my Dr’s office, NEGATIVE. I was dumbfounded. All I could say to my Dr was, I don’t understand? What about the weakness in my legs and everything? She said, and I still hurt to this day: TOO BAD YOUR LEGS WEREN’T WEAK ON YOUR WAY TO THE FRIDGE! I wanted to die. The one 24 urine came back normal too.
I have lost all hope. Then I remembered that the Endo Dr. said he would find the problem and I still held out some hope for help. When I finally got back to see him he said, I the the test were negative and I don’t have Cushings, good-bye and don’t let the door hit you on the way out. I will be honest here, the thought I had in my head was “I guess I need to die so they can disect my pituitary to find the tumors” an awefull thought huh? But that’s how low and dejected I felt. That was last month and I know something is very wrong with me. I have lost who I am and my ability to be a part of life. I know with all that I am that I have Cushings. It is the only thing that answers every one of my symptoms.
Read about it I have found that many Cushies have gone through what I have, but I have no-one to turn to and no Dr. will believe me after their test prove to THEM that I’m nuts. If anyone knows what I can do, please please help me. I do not have money and can not pay for tests myself. I need a Dr. to refer me in Canada. I’m putting it out there for help.
Thank you all,
Michelle in Richmond BC
Please disreguard spelling boo boo’s! This site needs spell check!
I felt I needed to up date where I am at this point in my Cushings journey. (Please read my first Bio posting Nov. 19th ’08)
I was in the pit of dispair as to what to due about my health and with no one to turn to, I went into a horrible depression. I had just ended a 20 year marriage that included abuse about my weight. Blame from everyone that my sysmptoms were all my fault and in my head. My grown children were no better. I live in a VERY image focused city and if you are not a size two, there is something wrong with you. Most people look at you as a freak. Fat biggots are everywhere. I wish I was joking, but it’s true.
One morning I woke up and felt I had nothing to loose by making a pain out of myself with my Dr’s or anyone that I thought could help. I came back to Cushing’s Help.com and looked up helpful Dr’s in my area listed on this site. I found two in my city and proceeded to write a 5 page history of the last 20 years of my life and the test that had been done on me (or not done) and 24 symptoms that I have. When they started and where they are up to now. I poured my heart out. I had nothing to loose by sending out this letter on my own but dead air space coming back to me. And I wouldn’t be worse off than I already was. So what the heck.
A couple of months past and I gave up on hearing anything back from these Dr.s, when low and behold, my phone rang when I was walking down the street. There was this Crisp South African accent on the other end saying her was Dr. Tom Elliot. It tool me a few minutes to have my brain put him in the right place and I was shocked that he called! He said he read my letter and he agreed with me that I was not properly tested! I was dumbfounded! He said he was going to leave some tests for me to pick up at his office and if they came back showing anything then he would see me, other wise I wouldn’t hear from him again.
I raced to his office and picked up. Two 24/hour Urines and an order for cortisol suppession blood test and 2 salavery test tubes. This was what I dreamed of. And I was so scared! What if it was true! What if I was really crazy and it was all in my head!
Anyway, I did all the test and took them to the labs myself. Months past. I thought the worst. Till one day I was walking down the street again and there was that crisp accent on the other end again! He said I need you to come in and see me! Some of your tests came back as abnormal!
He added me as a regular patiant and I discovered that it is almost imposible to get in to see this Dr. He doesn’t take new pateints unless he feels that they are a special case! I had hope at last! He gave me a physical and he kept saying yep and there it is and nodding his head. Finally we sat down and he asked me one question. He said: of all your symptoms, what one bothers you the most? I didn’t hesitate and said: the extreem weakness in my legs and all muscles. The painful fatigue. I feel that if I could have my body back, I could have a life again, He looked at me with understanding eyes and said he wanted to do one more salavry test and the he would see me in Oct. to discuss treatment for Cyclic Pituary Cushings! I couldn’t help myself. I started balling my eyes out! I wanted to hug him and bake him cookies. But he just didn’t seem like that kind of guy! He would have seen me sooner, but he was leaving on holidays. Now when I see my GP’s they don’t give me that “look” anymore and can hardly look me in the eye.
Remember all you Cushie out there, never give up! Keep rattling you cage and be heard. Someone somewhere will hear you!
All my best to all,