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Crystal, Pseudo Cushing’s Bio

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I was first diagnosed with psudo cushings at Duke University and was told that if I wasn’t better in a year to come back. I was on crutches for three months because of the weakness of my bones and I had fallen and cracked my pubic bone.

I suffered for a year and went back. I had high blood pressure, swollen legs and ankels, bruised easily, had gained 50 lbs., depression, my hair texture changed, it was like straw. My mid section was hugh, my face was huge . I had swelling around my neck. My toenails on one foot were crumbling. I had blurred vision, weakness in the legs and fatigue. I have probably left something out. I had MRI’s and CT scans and they couldn’t find a thing.

Thank God they referred me to the National Institite of Health in Bethesda, Md. In June of ’07 they ran every kind of test they could and could not find a tumor. I have been put in the catagory of one in two million. They first put me on a study drug called RU486. It was an abortion drug used in Europe in the 80’s which caused much controversy. It was supposed to keep the cortisol from attaching to the red blood cells. I took it for 3 months but it did not work. I just got worse. My potassium would drop and my feet would swell so big I felt like they could pop. I was given 20 bags of potassium intraveniously in one week at the NIH. Oh yes, I was also anemic and had to have a blood transfusion.

As a result from weak bones, I have also developed Avascular Necrosis. My right shoulder has deteriorated which causes much pain and I have to live on pain medicine. I stopped the study drug and am now taking the max dose of Ketoconazole and am also taking Mitotane.

I stayed at the NIH from Sept. to Nov. , 8 weeks altogether. I lost 35 lbs in one month. I felt almost like my old self again. I have a paraesophageal hernia and was taking Protonix. The doctors discontinued Protonix because one must have acid in order for the Ketoconazole to be absorbed.

Eventually I was in great pain. I had to sip my drinks and couldn’t eat sometimes without throwing up. Jan. 6 of ’08 I returned to the NIH and they did MRI’s, Ct’s, Octreoscans, etc. and still fould nothing. They think the tumor might be behind my hernia but with Cushing’s it is too risky to have the surgery for my hernia I am told. I got home Jan. 24 and was in more pain. I could hardly eat or drink.

On Jan. 30 I broke out in a cold sweat and started vomiting and then I had what I thought was diarrhea turned out to be fresh blood. My husband call for an ambulance. It turns out that I had developed an ulcer and it had a blood vessel in it that ruptured. I lost 1/3 of the blood in my body. The doctors told me I could have died easily. They were able to correct it with an endoscopy. I stayed in ICU for 2 days. I was discharged from the hospital just this past Mon. The idea here is to drink Coke with my medicine in hopes that it will produce enough acid to absorb since I must now take Protonix.

Tonight my ankels started swelling some and my arms are bruising. I am very frightened. If this medicine doesn’t work, and they can’t find the tumor, all that is left is an adrenalectomy. I hear that one never feels the same. Please someone, let me know.

Oh, I will be 48 on Feb. 12 and have always been healthy. I had never even heard of Cushing’s until I got it.

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Miriam, Undiagnosed Bio

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golden-oldie

Hi. I am M and I have had healthy problems for as long as I can remember.

It started when I was 10 with severe anxiety, depression and panic attacks. Luckily, I don’t remember most of the details, but I remember being under the care of a child psychiatrist and a psychologist. I was on a cocktail of medications for about a year. As some point, my mother read a bunch about the dangers of these medications and somehow weaned me off of them. I remained under the care of my psychologist for a year or two after that.

I think we hoped at that point that things would go back to normal, or something like that, but sadly, we were very wrong. A couple of months (possibly a year) later, I was diagnosed with diabetes, shortly before my 12th birthday. This was 12 years ago, when type two diabetes wasn’t often (if at all) diagnosed in kids that age. It took the doctors a while to determine if I was type two or type one, but they eventually settled on type two. In reality, it barely made a difference, as I was on insulin and oral medication- in essence being treated for both types.

Again, I wish I could say that this was the end of my health problems, but it wasn’t. For starters, my insulin resistance was (and still is) so bad that I am on enormous doses of insulin just to maintain a non-dangerous blood sugar level. I have  been plagued by nasty skin (bacterial, yeast and abcess) infections since high school requiring hospitalization from time to time, and anti-biotics terribly frequently.

I was diagnosed with PCOS at some point, having all of the typical symptoms: facial har (I actually bought myself a hot wax pot to avoid the cost and nuisance of going to get it all removed every week or two!). My period has never been regular. I have gone as many as six months without it, but it can be more frequent also. Obviously, I am quite heavy and have struggled with weight my entire life. Dieting is a horrible situation, as it takes extreme effort for me just to maintain my weight.

About two years ago I had terrible gallstones attacks, finally having my gallbladder removed after a week in the hospital with a gallbladder infection. I also have problems with nausea and heartburn which can be very severe at times. About 10 months ago I was diagnosed with an ulcer.

At some point my endocrinologist (whom I see for the diabetes) asked about my family history at length, and then concluded that it simply didn’t all add up. I do have a family histoty of obesity and type two diabetes on both sides of my family, but nobody has ever had a problem before 45-50, other than gestational diabetes. My siblings are on the heavy side, but not obese like I am. I don’t eat differently than they do, I don’t live differently than they do. He ordered a 24 hour urine test, assuring me that he is sure it is nothing but he wants to be thorough. I pressed him for details and he admitted he is testing my cortisol levels as he suspects they may be high and causing some of my problems.

I left the doctor’s office and (against my better judgement!) googled cortisol levels. I stumbled upon cushings disease and lists of symptoms and it all just clicked. I started crying, half in fear but also half in relief. As scary as cushing sounds, I promise it can’t be worse than everything I have endured. The idea that we might be able to treat the root cause of all of my health problems sounded dreamy and amazing.

Then I got back the results of the 24 hour urine test, and it was on the high side, but still within the normal range. The doctor is completely unconcerned, but something in the back of my head can’t let this go so easily (especially reading here and on other sites about the inacuracy of that test in diagnosing cushings).

I am facing this alone, am not a good advocate for myself, and am overwhelmed already, so I let it go. But now I have a new symptom, and when googling it (again, bad idea) I came across cushings again. And now I just can’t let it go. A couple of months ago I started experiencing severe pain deep in my legs (it feels like it’s the bone) when I walk. At first, I ignored it and started to cut down my walking. Eventually it got so bad that a walk down the block brought me to tears from pain. I finally went to my GP, who sent me for an MRI of my lower back. It turns out that I have a herniated disc in my back, but the doctor explained that he doesn’t think that actually explains the matching pain in both legs, as it is only on my right side.

He checked my vitamin D level, and said it was so low it is undectable. He sent me to an orthopedist, but I am still waiting to see that doctor. I am at my wits end right now. I am not yet 24 years old, and my body is in shambles. I can’t walk a block without pain, and when I push myself to walk and stand on my feet the pain gets so bad that I have to spend a couple of days in bed recovering. My friends talk about doing all kinds of things like going on hikes or visiting the statue of liberty, and I make excuses because I know there’s no way I could physically do something like that.

Right now I am so torn. On the one hand, I have a family history of obesity and diabetes, and have been clinicly diagnosed with that. On the other hand, I read through the list of symptoms thinking “check, check, check…” I am quite large around the middle, but have super skinny wrists, ankles, fingers, etc. I don’t want to be diagnosed with cushings (or any other scary disease) but I can’t stop thinking that nobody’s luck is as bad as mine!

What do you think? Does it sound like I have cushings? If so, how should I proceed? Remeber, I am completely alone in this, I have limited resources and money, and I am timid and terrible at standing up for myself. I hope that someone here can help, because I have never felt so alone and desperate in my life.

Thank you in advance,

M

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