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Maggie's Story

In early November of 2003 I started having shortness of breath and fluid retention so I went to my PCP thinking I might have a heart problem. We have a history of heart disease in my family, so that seemed logical. He ran a bunch of tests on me and about a week later I got a call to go see him.

When I arrived at his office he informed me that I had high ACTH levels and high cortisone levels and that he thought I might have Cushing's Disease. He indicated that I'd need more tests run and also an ultrasound of my adrenal glands and an MRI of my brain. He gave me the forms for the tests and I came home and started looking on the Internet for Cushing's Disease.

It's amazing, but I had never even heard of it before this time. Boy, was I shocked when I found this site and discovered that all the weird things I had happening in my life now had a name...Cushing's. I could not believe how many of the symptoms I had and for the first time in years I felt like Oh My God, I'M NOT CRAZY LIKE THEY SAID!!!

Let me back up a minute here and say that I was so scared that this might be lung cancer that I was praying it would be Cushing's and not that. I had read that the high ACTH and cortisone sometimes indicated ectopic Cushing's and I just knew I didn't want that to be the problem. So I was far more afraid of that possibility than of a pituitary adenoma or an adrenal adenoma. The wait was difficult for me but I finally got the test results and they indicated that I did have a pituitary adenoma. Then the MRI came back clearly showing the little devil.

I was so relieved that I didn't have lung cancer that I was happy when he told me it was Cushing's Disease. I joked with my PCP, and asked him how many other patients he had that were happy to be told they had a brain tumor. He's a really great guy and we chuckled about that.

Anyway, then he sent off a consultation request to the endo clinic at the University Hospital asking for an urgent appointment for me. By this time it was mid December 2003 and he told me that I probably wouldn't hear about my appointment until the week of Jan. 4th to 9th, 2004.

On January 8th, I called his office to ask if they had heard anything about my appointment and I was told that the doctor who was supposed to see me felt there was nothing he could do for me so he was referring me to another endo and I would probably not get an appointment with her until the latter part of April. Needless to say I was stunned as my PCP had said that I should be getting an appointment by the end of February at the latest.

I don't really know what made me do it, but I just felt I had to call the endo clinic and ask to have the situation clarified. The woman who answered the phone was abrupt and told me that this doctor had decided that I don't have Cushing's and that he was referring me to this other doctor. She also said that he had to reserve his appointments for those who are really sick and that because he didn't believe I have Cushing's that my appointment was not urgent and that's why it wouldn't be before the end of April. MAN WAS I FURIOUS!!!

How in the world can a doctor diagnose someone he has never seen? He saw my test results and my MRI report, which clearly stated that I have a pituitary adenoma. His diagnosis was based on one normal 24 hour urine test. Even though my cortisone levels were high, the MRI showed the adenoma and I have most of the Cushing's symptoms he doesn't think I have Cushing's.

Once I got through ranting and raving about this jerk I tried to think calmly and decided right then that I needed to take charge of my health care. I had been going to doctors for years and had been told over and over that all I had was depression. I was no longer willing to leave my fate in the hands of some jerk, so I took action.

I called the hospital in Calgary (a 5 hours drive away) and asked if they have an endo clinic. They gave me the name of the gal to contact and the phone number and I called. When I did, I was quite surprised when a man answered the phone. He asked if he could help me and I said I was looking for Theresa to enquire about the possibility of setting up an appointment and also to find out how long the wait for an appointment might be. He was very nice and explained that he really couldn't answer my question about the wait and said I should call her back on Monday to find out about that.

However, he did again ask if there was anything else he could do to help me. He said he noticed that I was from the Edmonton area and so was curious as to why I'd be calling Calgary. So I told him about the jerk endo in Edmonton. He then said that he was Dr. Hanley and if I wanted to come to Calgary they'd be glad to see me, to call Theresa on Monday and set it us. Well, I did that and I'll be seeing him on Feb. 3rd, 2004. I'm hoping he's as nice in person as he was on the phone.

Now I'd like to flash back to an earlier time and share some of the things that have been happening in my life over a very long period of time that I now realize are all Cushing's related.

When I look back now with hindsight, I believe my first symptoms of Cushing's started around 1976. That was when my metabolism started to change, I started to have a problem with facial hair and my immune system started to go to the dogs. I started having problems with staph infections, with boil-like gatherings. I also started to grow facial hair and to gain weight. I put this down to taking the pill and didn't really think much about it. At that time I was 27 years old, had been married eight years and had three kids.

Over the years from 1976 to 1986 I continued to gradually gain weight although I had not changed my diet and I was a very active person. We camped, hiked, played with our kids and did lots of active things. The facial hair kept getting worse also and the boil-like gatherings continued unabated.

During these years I had energy to burn. I had so much energy and could get so much done it was amazing. My family thought I was superwoman! I could go for hours and never get tired and I could just keep going and going, like the Energizer bunny.

Then in 1986 I had my first crash. I was going through a stressful time and started to have problems being able to focus and to concentrate. I was a teller in a bank and I would be standing at the counter and could not for the life of me add two and two!!! It was like I was trying to pull the information up from way, way down in my brain stem. I suddenly had NO energy and I was moody and my legs were wobbly. Things just kept getting worse and I finally had to take 3 months off work. After three months of sleeping and sleeping and sleeping, I finally started to get better and went back to work and almost to my usual level of energy, but not quite. I wasn't quite as full of energy as I once had been and I noticed that I still had some residual weakness in my legs. However, I continued my busy life and thought no more about this incident.

The boils were still persisting, the facial hair was still growing and I continued to gain weight too. I was forever taking antibiotics for the boils but nothing seemed to help. I never asked the doctor about the weight gain or the facial hair, I was too embarrassed to ask about that.

Time went along and when I look back now I realize that ever so slowly I was giving up more and more activities. I couldn't hike as far or as fast as I used to do. I didn't have the stamina I used to have. I didn't have quite as much energy either. However, I thought this was just because I was being lazy and not getting enough exercise. I never once thought it was because I might be sick.

Then in 1996 I had a really bad spell and I have never really been well since then. It started with brain fog and my energy going down the tubes and my legs being really weak. One day I got really nauseous and my legs just gave out on me. They carted me off to the hospital and I was told that I had an inner ear infection. They gave me gravol and sent me home after a few hours. I was sick for weeks. I had vertigo and my brain was totally fogged. I could not drive and I could hardly stand up. I now realize that I must have been having a mini adrenal crisis. I don't know if my cortisone was really too low or if it had just dropped so much so fast and that's what caused it. I guess I'll never really know and it really doesn't matter. However, it took me about three months to start to feel a bit better. That lasted for a few weeks and then I started to have all kinds of problems again.

I started to have major hot flashes, night sweats, I was jumpy, anxious, depressed, weak legs, couldn't concertrate, my memory was terrible, I had major brain fog and on and on. I went to the doctor and first they said it was menopause. At that time I was 47, so that seemed kind of logical. When things didn't get any better, they told me it was all in my head. By then I really was depressed because I knew there was something wrong with me but no one seemed to believe me. This is when I really needed a patient advocate and didn't have one.

Anyway, from 1997 to 2000 I went through the worst time of my life. At my worst I couldn't even walk down the hall without holding onto the wall. I laid on the couch for days on end and just wanted to die because I didn't think I had enough energy to keep breathing. I have never experienced anything so awful in my life.

I had a new little granddaughter and I could not pick her up. I had to sit down and then someone had to put her in my arms and I could only hold her for a few minutes because I'd get exhausted. I was in such bad shape I couldn't think and couldn't reason nor finish a thought. And still they kept saying it was all depression.

Finally, in 2000 I got a little better and began to realize that I had just basically lost 3 years of my life. I began to realize that there was something very wrong with me and that it WAS NOT ALL IN MY HEAD! I got on the Internet and started looking for diseases that might match my symptoms (weak legs and arms and fatigue) and came across Multiple Sclerosis. I had many of the same symptoms and so thought that might be it. I asked the doctor and she said no, it isn't MS, it's depression, even though I told her about the fatigue and the wobbly legs and arms. She wouldn't even consider it. I then went to a different doctor and she sent me for an MRI.

The results of that MRI showed that I have a condition called Chiari I. With this condition fatigue, brain fog, weak legs and arms, loss of memory and concentration are all common so I thought at that point that this is what I had.

By then I was way overweight and had a moon face and a full face of hair and a buffalo hump and all but thought those things had nothing to do with my health problems. I made up my mind that if I had to live with my problems I'd make the most of my life and so I never complained to a doctor about anything.

From 2000 until now I have seen many additional symptoms of Cushing's appear. I now have high blood sugar, high cholesterol, skin tags, an even bigger moon face, weaker legs and arms, shortness of breath, fluid retention, much more fatigue and sleeplessness.

In looking back I now realize that I've probably had Cushing's for at least 27 years. I have had a problem with my body temperature for years. I go outside in winter with just a fleecy sweat shirt on. I only wear a fall jacket if it's 20 below. I have not been able to do my own hair for at least 10 years because I can't put my arms up over my head. And I blamed myself for that, thinking I was just lazy and if I'd lose a few pounds and get off my fat duff I'd be able to do it.

The worse thing for me is that I can no longer drive for very long. If I drive for half an hour I am wiped. And at Christmas this year I could only shop for half an hour and then I had to quit as I was wiped. The other thing that I hate is that I can't be around my granddaughter for a whole day as that wipes me out too.  These are the three things I hate the most about this disease.

I am so grateful to my PCP for diagnosing me. I now have hope that I can get at least some of my life back. I have been in a very, very isolated hole for a long time. I have gone out less and less because I just haven't had the energy to do things. I have had days when I did not even have the energy to turn on the television, so you can see that going out would have been out of the question.

I work from home and so except for the time between 1997 and 2000 I could always find some time during 24 hours that I could get some work done. However, over the past few years I have done less and less housework and cooking too.

Right now I want to focus on getting a date for neurosurgery and getting as well as I possibly can. I want my life back and I'll do whatever I can to make that happen.

I'd love to hear from other people who have had Cushing's for a long time. That's one of my concerns...I wonder how much I will regain, but even 50% is a whole lot better than what I have now. I also know that I have an addictive personality, so I expect that the withdrawal will be hell for me. However, I look at Val and others like her who are so courageous about the weaning and I know that with the help of the great people on this board and my family, friends and God, I'll get through that too.

I'll update this bio once I have more information.

Marg Ruttan
(Maggie2)