Hi my name is Kristi and I’m seeking any help or advice on Cushings.
I had always been active growing up into sports, running, weight lifting and horseback riding.
27 Yrs ago I gave birth to a beautiful healthy daughter. I was a size 10 and had only gained 25 LBS during prignancy. Less then a year later I was carrying my second daughter. I had no appetite and could barely eat but was gaining 10 pds every other day. My blood pressure soared and I was diagnosed with pre-eclampsia. I have been sick ever since I gave birth.
In the past 20yrs I have put on over 150 lbs and I can’t get it off. I was told I had a fatty liver and my cholesterol and triglicerites are off the chart. I began having memory trouble even forgetting my daughters name, hair loss, blurred vision (even typing this is slow going so forgive any mistakes) I started falling, loosing bladder and bowel control, walk into walls, tables and door frames/ I’ve had bouts of blndness and layered viion (Multiple Sclerosis has been ruled out) chronic body and nerve pain, horrible mood swings from happy, depressed, anger, intolerance (it’s like a daily rollar coaster ride) SEVERE salt cravings, low body temp, heaviness in legs, bruising, infections, trouble healing, brain lesions., trouble sleeping. Get cyst on my breast, head, ears and pubic area. Have little hard bumps on pubic area that never go away. No sex drive left for husband and even when we are active it’s very painful.. Major swelling in face, neck, legs and feet, backaches, headaches. When I stand up I feel like I get a head rush or lightheaded and I flap my arms to stay up or I fall back into bed or chair. I sweat even in winter. I do have the buffalo hump, the stretch marks, the moon face, brain lesions and the discolored skin under breast, behind neck and arm pits.
Dec. 6th I had a carbuncle which had develped staff and mrsa removed from my armpit. My whole armpit had to be removed and a couple weeks later I developed an abcess and had to go back to surgery. It has been 5 months and I still can’t heal. Have been packing the wound every day and seeing the surgeon every 2 wks. Now I have a carbuncle on the other side and I’m facing more painful surgery after this side heals.
Today I recieved a call that the urine test I took for cushings came back with normal levels. Needless to say I sat down and sobbed. I am 46 yrs old and I have been sick for half my life. I have seen so may doctors, been through so many surgeries and painful testings. I have been told over and over that there is something wrong but the Doctors can’t find it. I thought cushings was the answer and that I could finally get treatment and get better. I look in the mirror and I don’t recogize this person I see….How will I start over again on this long search for answers? Where will I get the strength?
Apr 28, 2017 @ 10:01:42
Kristi, I am going through the same thing. I was diagnosed with MS in 2008. They noticed the lesions on my brain when they did an MRI for migraines, then followed with a spinal tap, which was also positive for MS. I thought ” FINALLY” someone found out what is wrong with me….So I thought. I was doing ok, they started me on MS meds ( DMD’s) and IV steroids, and I started to get worse. I out on 70 lbs in 4 months and climbing. I was always petite, my entire life. I was 122lbs in 2014 and now 202 in 2016, and the worse part is I have no appetite, so I don’t eat. I drink ensure when I absolutely have to put something in. I have all the symptoms of Cushing’s and the saliva tests were negative and I do not have a tumor on my pituitary. I am home bound, I lost my business, my home, everything I own, I cannot work and am under 24/7 home care. I have a doctor now (primary) that treats me at home and he is trying to help me figure this out. He is going to do a test where they give me steroids to shut off the adrenal glands to see if I still have high cortisole levels, and also a 24 hour urine test. I have so many symptoms and this has been going on for so many many years, I don’t know what to do either. I have been misdiagnosed with so many other things along the way and I share your feelings with all this and would like to just let you know that your not alone. I will try to get back to here and see if I can let you know what I find out, because we have so much I common. I just hate the thought of anyone else going through what I am, because this is my hell. I feel like a proper DX is urgent now, or the hospital bed is my future. I’m 44 years old. 2 kids and 1 granddaughter and I am homebound and I know I can be better then this, I just need to find it. I just got out of the hospital because my neuro thought this was all an Ms flare and I cannot tolerate the steroids anymore, the Prednisone and solu-medrol makes me suicidal now, so he gave me 5 days of IVIG, (IV immuno-globulin) and I ended up with aseptic menengitis. So we will see now if its Cushing’s Syndrome or Addison’s or something else. I do have nodules growing on my adrenal glands and something like a calsification or mass on my liver and no one has ever seem to pay any mind to it regardless of my symptoms until now. I will keep you in my prayers.