Arlene’s Story

Three years ago I began to feel strangely…my feet got very swollen and I felt fatigued easily and my abdomen began to swell. My son remarked that I was gaining weight…sons!!! I went to my family doctor and he suggested diet and exercise. I hired a personal trainer and worked out everyday for an hour sweating buckets and falling into bed dead after each workout. With all that I was gaining 2 pounds a week. I thought this was a joke; a sick joke; a nightmare. I knew illness before in my life but nothing like this. Something was taking me over and I felt like I was living in a science fiction movie. My face changed, round and fat from oval shaped. I could not lift a shirt over my head to take it off. Stairs became difficult and I cried easily. My husband, who adores me and cannot see me cry, said we will find a way to get me better at all costs. My family doctor noticed the changes in me and sent me for a special 24 urine test. Cortisol levels were high and Cushing’s was suspected; two words I never heard before in my life. He referred me to an endocrinologist. The endocrinologist did one overnight dex test; patted my arm and sent me home telling me I didn’t have Cushing’s and I was fine. Fine? I walk with such pain and no longer recognize myself and I am fine???? I went to another endocrinologist who suggested an MRI. One report said a microademona of 5mm x 3mm was found and another report said it was not very clear. I had 2 more MRI’s and still not too clear. I went to a neuro surgeon. He said he found the tumor on the MRI and was ready to operate but first I needed some data from an endocrinologist and he referred me to one. This endocrinologist built a fancy house after returning from 3 years in Beverly Hills and loved life there so he charged me lots of money; for example a $100 for a plastic vile to do a blood test. In the end he said I may have Cushing’s but should consider stomach surgery to lose weight. It was at this time that I contacted Dr. Mary Lee Vance, an international Cushing expert. She was furious that an endocrinologist would recommend such surgery with me having high cortisol results. She felt I had Cushing’s. It was too far and too difficult for me to fly to her in Virginia but she stayed in contact with me and I referred to her as my invisible angel. She gave me the name of another endocrinologist here; someone she knew personally. I went to see him 7 months ago. He is very cautious and careful in diagnosis but I felt “safe” for the first time. I could hardly climb stairs anymore, my weight was going up all the time and my hair was falling out. I would close my eyes at night and pray not to waken in the morning. He put me on a med called ketoconazole; not a cure for Cushing’s but which has put me into a definite medical remission. All my blood work is now with normal range. Blood pressure is normal; something which it hasn’t been in years. I have lost 20 pounds so far. Because of the high cortisol levels my bones began tearing; osteoporosis. They put me on a wonderful pill which I take once a week and acts like a glue to my bones thus reducing pain. I may not have Cushing’s. I am not sure. My endocrinologist said I have a definite endocrine problem and hopes to have more news for me on my condition in 2 months. In the meantime I work. I have never missed a day of work to the amazement of my doctors. I teach 200 children a week. They are my “flowers” and I like to brag that I have the most beautiful garden in Israel.

I feel like I am on my way…I have hope again. In conclusion I would like to thank Grandma K for this special and unique site. I have visited others but this is the most compassionate one…the real human one and I am grateful that it is here. I would also like to say that if anyone ever wishes to write to me, or if I can help anyone in any way, I would happily to do so with all my heart.

Arlene

Updated October 6, 2003

I don’t know if I am in the correct place to update my story but I will just take a chance and do so here. I wrote my
story here over a year ago I believe. To summarize briefly I had been ill for years, lots of swelling, body pain, steady weight gain, great fatigue, lumps of hair falling out, all joy and laughter gone out of me and everyday was another nightmare. I began seeking out doctors. Being 50 years old, looking as I did most doctors told me to go on a diet and exercise and nothing was wrong with me. I was beginning to think I was crazy. I could no longer walk up stairs normally nor lift my arms over my head. For almost 3 years I never left my house except to see another doctor. I begged my family doctor to send me for bariatric surgery. He looked at me and asked me to do a 24urine collection. I did. That was the first time I heard the word “Cushing’s” and “cortisol”. My cortisols were high. I had a huge swollen abdomen; my feet were like 2 dead rats and I could not find a pair of shoes to put them in. My face blew up like a giant moon and my shoulders were swollen like a bodybuilder but my body was not a normal body by any means. I no longer recognized myself. A day did not go by that my eyes were not filled with tears. I wondered what I did so wrong in my life to deserve this. Thanks to a compassionate and devoted internationally known doctor of endocrinology, Dr. Mary Lee Vance, I was able to understand what was happening to me. She told me not to have bariatric surgery by any means as my problem is hormonal and most probably pituitary. She stayed in touch with me throughout 2 years as I live overseas and to go to her clinic would have been impossible for me at that time.

I decided to seek a neuro surgeon on my own. without recommendation from an endo. He immediately told me I had Cushing’s and found a small tumor on the left side of my pit. He said he could operate within 2 weeks but I should consider seeing an endo again first. I was so confused; I did not know where to go. I was so limited here; my case did not match others meaning my symptoms were like some others and unlike others also. One endo told me because I had no striae (red stripes) then I don’t have Cushing’s. Dr. Vance told me many people don’t have those and not everybody has the same symptoms. After mentioning her name here to one endo he decided to put me on a treatment of ketoconazole pills. I went up to 1200mg a day. I lost a tiny bit of weight. I was diabetic and there was a real slash in my insulin after a few months but I was sleeping all the time and not too much else was happening. They sent me for another MRI and this time no tumor was found but the neuro, who is number one in this country (I live in Israel) said there is definite reason for exploration. My endo agreed with me that the insulin changes were great and perhaps now I should go for surgery. Needless to say I was terrified beyond words. I met another woman, my age, here who contacted me having heard I had Cushing’s. She had surgery and was doing great. She said the surgeon was wonderful. In that moment I decided to go for it. I waddled into the hospital holding a cane and wearing slippers. For me this was the end for I knew I could no longer go on anymore. My heart was beating but I was not living. My surgery was difficult because of the anesthetic and I heard them say no tumor was found so I just felt totally finished. Professor Hadany, my neuro surgeon told me Cushing’s is very complicated and he has operated on others where no tumor was found and they were cured. He called it a “dusting of the pituitary” where he said a tiny tumor which could not been seen could have been cleaned out. I held onto his words. This was not a surgeon who needed to operate on me cause he had nothing else to do. He is an amazing doctor. I went home and returned to work 4 weeks later. He suggested 6 weeks but I own my own school and I desperately missed the children. For 3 months following I felt almost no change. Then I became quite ill; nausea, terrible nausea and vomiting something which almost never happens to me. This lasted for 9 days. My husband had to pull the car over to the side of the road as I was so ill driving to see my endo. He called it a “spontaneous recovery” and said he was very optimistic. My face was no longer round (although that happened a week after surgery) the swelling in my hands and feet went down. I can wear sneakers today and bend down and put them on myself; a miracle. My hair no longer falls out. I had it permed and styled. I tied it up in a bun for years before this. I sleep all night, sometimes getting up once. I used to get up every hour on the hour to the bathroom. I hardly cry anymore and I laugh again. I MEAN I really laugh; it feels so good. My weight???? The number one question to most people…yes I am losing weight but I have no idea how much or what the number is. I refuse to go on a scale. I can tell you that my clothes are now down 2 sizes although I don’t notice it much; many people tell me. According to my eye doctor my vision has improved. I suffered severe bone loss in my mouth from the high cortisols and had gum surgery recently and the bone loss has stopped and I am healing well. I still have a swollen abdomen; perhaps now it looks like I am carrying twins instead of triplets but hopefully that too shall go away. My lips were dry and cracked an now smooth again. My eyes were red like a rabbit and now clear as they should be. I have so much more energy. I clean and work and go out and so grateful for all these things; who would ever think I would thank GOD that I could wash dishes? I do. I could not stand long enough to do a dish a year ago. I no longer have giant hunger for food. I eat like a human should eat and that too feels good. I bought a treadmill and now I try to use it slowly each day for 15 minutes. The high cortisols and Cushing’s left me with osteoarthritis in my knee and after a painful attack I am just walking slowly. I am taking each day one day at a time; each other and each moment at a time. Something big has changed inside of me that I know will never come back. There is a deep scar on my soul that will stay there forever. My dream is to help anybody who wants my help for I do not know if I am “cured”…BUT…I do know that I am much better than I was and I do know that today I am alive and functioning and so grateful for that.

Before closing, I must add that I am also very grateful to my dear friend Cris, for we have been holding hands across the ocean now for years. She started off as my Cushing’s buddy; she is now my spiritual friend and was always there for me which is better than any medicine in the world. Speaking of which I also take less meds than I used to. If my story has helped even one person, I am grateful. This is a great site thanks to Widebertha and I wish her health and recovery real soon also.

Thank you again…Arlene

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