And It's About Time There Was Some Support For Cushing's!
I am a 49 year old female. I had a total hysterectomy at age 29 due to endometriosis.
For 5 to 6 years I gradually experienced problems with memory loss, lack of focus, motivation, felt tired alot, some weakness, confusion, disorientation when I drove, depression, high blood pressure, acid reflux problems, weight gain especially in the last two years. Have previously been a very successful sales executive but became disabled April 2001 and continue to be on disability due to severe memory loss. Some days are better than others for what activities I can accomplish. Some days I can't even focus enough to follow a list to do and misplace it. I may start another list to misplace it. I misplace keys, my watch, etc. and get very frustrated because I used to function very well. Have been told at one point there was a concern about early onset of Alzheimer's but have had multiple tests and believe that it not the case. Cat scans detected empty sella syndrome, and the pituitary can not be found.
Now am being told that I have hypopituitary. I have adult growth hormone deficit. I also have carpal tunnel in both wrists, had surgery for worst wrist in July. That wrist is better. I sometimes experience back pain and pain in muscles, joints. I have headaches that nearly make me sick at my stomach and my vision has gotten worse with some blurriness sometimes. Headaches are not constant but once or twice a week. I haven't had really bad headaches recently. One occasion saw double and nearly passed out. Currently taking blood pressure medicine, acid reflux medicine, growth hormone supplement which has been increased to four tablets a day and spray three times a day, water pill, effexor, wellbutrin, estrogen, testosterone cream. Many doctors don't know what is best for me next.
Have been told by one doctor that if the growth hormone deficit doesn't significantly improve should go to Mayo Clinic in Minnesota for evaluation. Have already gone to UCLA, and Scripps Medical in California. Growth hormone level is 70, was 110 when I had to go on disability. I experience times where I sleep alot, tired and very weak. Other times I feel fairly good. Can not predict ahead if I will have a good day or bad. Have had no real support except for loving husband and family. Difficult to understand and know where to go for best evaluations, tests, etc. Anxious to connect and understand all this. Very lonely out here. Hoping to learn more and connect with anyone in similar situation.
If anyone has any suggestions please let me know. I would greatly appreciate your input as it is also frightening to know I am not getting better.
I have been told I have empty sella syndrome, a hypopituitary condition, and adult growth hormone deficit. I will be going to Mayo Clinic, Rochester, Minnesota to get further help and diagnosis on May 5, 2002. Despite 2 MRI's taken my pituitary can not be found. If anyone has any specific information on this please
To update everyone on the latest I had gone to Mayo Clinic in Rochester, Minnesota the early part of this past May to try to get a final diagnosis on what was wrong. For approximately three years I had gone to several doctors locally then to UCLA twice, and Scripps once to determine that I didn't have my worst nightmare of what was originally diagnosed as early onset of Alzheimers. I did have empty sella syndrome, hormonal imbalances but mostly it was determined at Scripps that my symptoms were so non specific and no real diagnosis was made. I was very, very impressed with the professionalism of Mayo Clinic and the entire staff, of the doctors, and how the tests were conducted etc. It was determined there that I have a partial empty sella (not a total empty sella syndrome as was first thought.)
I also suffer with chronic fatigue syndrome, deviated septum (left nostril is abnormally too small), possible sleep apnea (later found to be sleep apnea after further testing), no adult growth hormone deficiency (as first thought.) I no longer take Super HGH supplements as a result of the findings on another stimulation test done at Mayo using insulin as the stimulant. My symptoms really reappeared when my blood sugar levels dropped to 40 during that test done at Mayo. I had the pressure in my head, the feeling as if I was going to get another bad headache, strange feelings that I was going to pass out (an almost out of body sensation), very tired and weak sensation. The only symptoms that didn't reappear were the tingling sensations up and down my arms, ringing in my ears, and difficulty trying to breath. I was checked over there from head to toe and had such thorough exams that I am confident of their findings. I was there for 11 days and they also determined I had a questionable looking mole that was removed (10 stitches later.) The biopsy of the mole showed abnormal cells and I had another surgery (15 stitches later) on the same a rea but deeper and more tissue taken during the surgery on June 13th at Mayo Clinic in Scottsdale, AZ. Fortunately, no other abnormal cells were found and nothing more serious.
On August 1st I will be in Scottsdale, Az/Mayo Clinic to see another specialist there to determine if I need surgery to correct the deviated septum problem. I still experience good days and bad days with the lack of energy and motivation but I now sleep with a CPAP machine that assists me from choking in my sleep when the tongue falls back in my throat. This had awaken me but I never realized why or that I was doing it so I never slept well. Now the CPAP does help and I realize the difference in how rested I feel on some days versus that I experienced in the past. I now have something to compare it to and I didn't before so it was difficult to make the doctors understand. I can not say enough good words and/or praise about Mayo Clinic and the whole organization both at Rochester and in Scottsdale! The doctors never rushed me and answered my questions with no issues about rushing me through a 10-15 minute appointment.
The doctors took time with me and treated me as the most important person (not number) there. The doctors have even called me since I have returned home to check on my progress, unlike the local doctors here or from UCLA or Scripps. At last I have gotten some answers and never once told at Mayo my symptoms were non specific. I would appreciate anyone's email who may be experiencing any of my symptoms and those who share chronic fatigue syndrome, sleep apnea, partial empty sella syndrome, hyperpituitary problems, deviated septum issues.
My email address is Marty Collins@LVCM.com. I maybe getting more updated information on chronic fatigue syndrome, etc. and would welcome the opportuniy to share it so others do not spend three years so frustrated, scared, and upset as I was trying to get some solid medical information about my health problems. Granted, others my have nothing but good experiences at the medical facilities I had descibed early but unfortunately I didn't and had to take charge to change the outcome of my experiences.