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Judy H's Story

I have read so many of the bios on this site and it has helped me I want to return the favor and maybe help another. When I was diagnoised with this I was 44 years old, white female and a very healthly my whole 44 years. I was the proper weight, ate well, exercised and was training for a marathon when it hit. I was diagnoised with Etopic Cushings Syptoms. My story goes....

My doctors say I could not have had this for more than year. After going through what I have I know for sure it started in 2000 but may have had it before then. Will start with the most noticeable one.

May 2005 Started to lose my hair, was told by my doctor and hair dresser not to worry I had a lot of hair. Had alot of energy meaning I could go and go required very little sleep. At this time in my life I was under a lot of stress.

April 2006 Hair still falling out, started to gain weight (meaning 10 lbs within a month) then the worse could not sleep, it started at about 6 hours a night to 3 hours a night. Also started to have like a hot flash, meaning I would just all of a studden get hot, skin turn red, would stay for 20 to 1 hour long and then go away and this was 24/7, nothing would bring it on it just would come and then go.

June 2006 Went to my GP (new doctor new area) gave me the normal tests, all was fine, blood pressure, took hormone tests all within normal range. I was told I was probably pre-menospasal.

August 26, 2006 woke up with swollen ankles was in emergency on the 31st. No one could figure it out, I have an elevated white cell blood count, blood pressure elevated. Was told to see and Encro.

September 2006 saw an Encro, it took until October 26th before I was diagnosised. At this time I am on 9 different medications to control my blood pressure which was up to 240/170 lowest was 190/110. Was another 20 pounds heavier, moon face (at least 10 sizes bigger), hair on my face, hump on the neck, losing my eyesite, losing the ability to walk, control of my blatter gone. Teeth affected, had what is called a yeast infection in my mouth (white film). My sugar levels were in the 300 hundreds, potisume around 2 - 3 should be 4-5, heart enlarged (working to hard), skin thin and cracking, full diabetic brown toe nails, cold on my legs and arms. Thinning of legs torso huge, neck huge could not move it around. Could barely walk, energy was maybe a hour or two and then sleep for two, nighttime maybe 4 hours a night. Cortisol was up over 2000 24/7 normal is around 15/30.

I had every test know to man kind including a pet scan. The problem was a beign 1 cm tumor in my lower righhand lob of by right lung. I had a surgent remove a portion on my right lung. That was November 2006.

It has been just over a year. I am not on any medication, moon face gone, hump gone. Pretty much everything is gone, my cortisol levels are normal and working properly. I still have problems in my fingers and feet. Strength and indurance is gone. I get very tired and can not do as much as I did before I was sick. I am back at the gym and starting very slowly at trying to get alittle more strength and indurance back. I do have 30 pound sto lose (that did not go away). I do work 8 hours a day and keep up but I am tired at the end of the day. Difficultly standing for long periods of time, extreme fagitue and I have to sit down.

I look at life diferently then I did before and I am very grateful for all that I have and continue to strive for me. A word of advice for anyone reading this. You know your body better than doctor will ever know, if it is not working correctly do not stop until you find it. i firmly believe the reason I am still here is that I would not give up and fought it every step of the way. If a doctor is telling you are fine and you know that you are not fine, get another doctor and keep up with it until someone does find it.

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