And It's About Time There Was Some Support For Cushing's!
I am in the process of being diagnosed with Cushing's disease. After 2 and a half years of various illnesses, regular trips to the Doctors, unexplained health problems (after being very healthy), tests coming back negative - I have come to the end of the path and finally it all makes sense! In December 2003, after having an MRI scan, I was diagnosed with a pituitary tumour, stressed by the consultant that it was benign and not to worry about it as it would be rare to be cancerous (you're not going to die tomorrow were the words used). So I had a brain tumour...wow...scary. I was informed that with the right medication the tumour would reduce in size and then I was referred to the endo. Three weeks ago I was contacted to see the endocrine nurses for blood tests and an injection to check my cortisol levels. That was when I first saw the word 'Cushing's?' on my blood test form. I'd heard of it but couldn't place where - eventually I realised it was through doing some internet research when my dog was ill!!
As soon as I read 'Cushing's' I was straight onto the Internet - I'm not one to hang around and believe knowledge is power and researched as much into it as possible. I was dumbfounded. I had had two years of hell, not knowing what was wrong with me. My husband and I would sit for hours discussing my health problems, how I had changed from being this healthy individual to some sort of hypochondriac, well that's how I felt. Two and a half years ago I miscarried in my first term, then I fell pregnancy 6 weeks later. I ran my own business and and worked really long hard hours throughout my pregnancy. During my last term I suffered a lot of pain and tiredness and lots of people told me to slow down, I didn't heed their advice as I was scared of losing work and we needed the money to buy a new home. In October 2001, I was admitted to hospital and induced, 5 weeks early, I was also diagnosed with having pre-eclampsia. My son was born prematurely and suffered breathing difficulties - he also had a huge mole on his back (which he is still having surgery to have removed). He has also suffered heart problems and had to have a catheter operation at Great Ormond Street Hospital in January 2003. That was when things really got worse for me. I had lost over 30lbs after my son was born, then I gradually put it back on. In 2 years, I had the stress of the birth, I gave up my business, I had 2 deaths in the family, we brought a house, my sons operations, my husband lost his job, we tried to find work, money problems to name but a few. My stress levels were very high. In January 2004, my periods stopped. The doctor said it was down to the stress, but despite all that I had never missed a period in my life - I was not convinced. I then had problems with swollen toes and fingers, nausea, weight gain, sciatica, facial hair,
I had ingrowing toenails where my toes had ballooned and had minor surgery, they got infected and I have had trouble walking comfortably for a year!, my symptoms go on. I have blood test after blood test and feel like a pin cushion. I have given so many urine samples, it's unbelievable - but with no results. I was getting to the end of my tether when finally a doctor said he would refer me to a gynaecologist after I pushed and pushed. I had more tests. My prolactin was 3000, so I was sent to have the MRI to see how large the tumour was. Now I am being tested for my cortisol levels. Having investigated Cushing's I can say that I would be shocked to discover that I didn't have it. The stories I have read could be like reading my own story and it is comforting to know that I am not alone because you do get this sense that nobody really knows what you are going through. The mood swings are terrifying. I am a very calm person, but I can turn into this awful person that I don't recognise if my stress levels rise - it is so scary. I just want to be little old me again. I want to lose this 'moon face' - I want to lose the 'buffalo hump' (what a name to give it!... - they could have thought of something more flattering!!) - I don't want to be overweight. Fortunately I have a good sense of humour and have kept my spirits up throughout and have tried to laugh in the face of all this madness, but inside at times I do feel so sad that this is happening to me.
Over the past few weeks I have noticed more changes physically, my skin on my hands is thinning and my joints ache so much. I rarely sleep well, I am always up at around 2-4am in the morning and my head is usually buzzing with ideas, thoughts and worries. My head is always in a constant high. Also my vision isn't great, I get dizziness and flashing lights and sometimes think I see creepy crawlies run across the room, when in fact its just black dots!! My case is being brought to the surgeons meeting in April 2004 but I will be having surgery to remove the tumour, which is still benign but has enlarged and is pressing on my optic nerve. I am not sure when that will be but hopefully not too far in the near future.
My family are being so supportive and so are the people I work with, which is a fantastic comfort. I am scared, but I am trying to keep optimistic and my spirits up. I am so happy that I found this site. I know it is based in the States, but Mary, keep going with this - you seem to have touched the lives of alot of people, who would otherwise be completely alone and left in the dark about this rare disease. Thank you!