Discussions By Condition: Medical Errors

Anyone have a pituitary tumor misdiagnosis story?

Posted In: Medical Errors 6 Replies
  • Posted By: Anonymous
  • January 20, 2007
  • 09:12 PM

Does anyone have a pituitary tumor misdiagnosis story?

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6 Replies:

  • My friend. Irregular periods, panic disorders,vision changes, mood swings, cortisol levels off the chart etc. Best of luck. Hers is benign, and she is on several drugs for depression and pain but they won't operate beecause she has a deviated septum and it is too risky to remove it otherwise. All of her hormone levels from her kidney function and everything else is whacky. She has massive mood swings as well as paranoia.
    Anonymous 42,789 Replies
    • January 23, 2007
    • 02:09 AM
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  • I was misdiagnosed for 3 + years while my Cushing's Syndrome got worse and worse. I went to the doctor because my mom noticed a buffalo hump on my back and I was repeatedly told by a number of different specialists that it was simply a "fatty deposit". They didn't put my constant headaches, bloated face and belly, weight goan and insomnia together, which are classic Cushing's symptoms. Finally, I went away to study in Paris for 6 months, and when I returned, my appearance had altered so greatly, that we went the round of doctors again. Still, there was no diagnosis until my mother and I took a phrase we heard at the doctor's office (adrenal problem) and researched it at the Medical School Library. I found Cushing's in a book, photocopied the page, highlighted the pituitary tumor part, and brought it to my doctor telling him to test me for it because that was what I had. Voila, that's what it was. Surgery took most of the tumor out and I have had no recurrances since. Please keep at it if you have any of those symptoms. Doctors seem to split symptoms and treat them individually these days, rather than lumping them together to come up with a diagnosis.
    Anonymous 42,789 Replies
    • February 8, 2007
    • 04:09 AM
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  • I may be in the middle of a misdiagnosis story. I went to Puerto Rico on vacation last summer and when I returned I started feeling really bad. I was so fatigued I could hardly accomplish my daily living activities. I was moody, angry, depressed. I had been diagnosed with BiPolar so I thought I was just having a bout of that. However, the symptoms continued to compile.insomniafatiguemuscles hurtjoints hurtheadachesintolerance to coldprofuse sweating and hot flashesangerirritabilitymood swingspain during intercoursepain after intercourseconstant excriciating (sp) painThese were more than just 'mental' conditions. I finally went to the doctor and he ran a battery of blood tests looking for Lupus, Lyme Disease and other things. The tests came back normal. This doctor was rude and in a big hurry. I even brought him a list of all my symptoms and he just put me on an antidepressant.My symptoms continued. I went to a new doctor. He diagnosed me with Fibro Myalsia. He gave me a new antidepressant, cymbalta to help with the pain. The pain was much better and the depression gone, but the physical symptoms remained. He said I might have a case of "bad-year-itus". WHAT???Over the next few months, I noticed my breasts were getting larger. I thought it may have been because I put on about 6 lbs. and some of the weight went there. Then, in retrospect, I realized that my breasts were also tender and 'full'. One day recently while hanging out with my daughter I felt the sensation of 'let down' in my breasts. The exact way it felt when I breast fed both my children. My kids are 9 and 14, and I had undergone a hysterectomy 7 years prior, so I had no reason to be having this condition. I finally decided to see if I could express milk from the breasts and I could! Imagine my shock!That was enough to push me to the doctor once again, seeking answers. Yesterday while in his office he said he thinks I have a pituitary tumor. The blood tests are being processed as I type this. When I find out more, I'll post it.
    Anonymous 42,789 Replies
    • February 8, 2007
    • 11:09 AM
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  • I was diagnosed with a pit. tumor that is benign and inoperable. It is post pituiatary which caused secondary adrenal insuf. I had alot of symptoms mentioned above. They put me on steroids amongst others. The main thing was my eye sight went bad. I never suffered any headaches and the vomitting was from the adrenal gland. I had to get diagnosed in the big city because they kept telling me I had a virus going around. It is hard to get diagnosed. I suffered major pain all over which is under control by non narcotic pain killers. There's nothing worse than being drugged up. They do not know what caused all of this. But, the steroids have slowly gotten me back to normal outside the weight gain. I wish my tumor was able to be gone then maybe the adrenal gland would function on their own and I'd get healed, but there's no cure. They can only mask the symptoms and replace what cortisol I don't produce. we've talked about radiation, but the doc's are scared they will fry my thyroid. I've heard of people having radiation on benign brain tumors and it has never come back, I don't know why they just don't try it. I would love to get off all meds and be asymptomatic some day. I was fine until two years ago when I began to get black out spots and got really really cold with major pain over by my kidney then the shaking and vomitting started. That's when they found the problem, but I too had "leaky breasts" which was embarrasing. my vision came back and I'm living somewhat of a normal life. Sorry so long. It took me six months for a diagnosis and when they found it they said I was in the process of dying my blood levels were low. The important thing is to keep up the blood levels so they don't drop so they monitor me every three months. I am thankful I went to where I did when I did.
    Anonymous 42,789 Replies
    • February 8, 2007
    • 02:43 PM
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  • I had a nuerologist tell me that sexual foreplay can cause "leaky" breasts. I'm not being perverted or anything thats just what I was told. So, it must be some type of hormone response triggering it. I know prolactin and oxytocin hormones can help detect this issue, but don't know all thats intailed. Hope this helps.
    Anonymous 42,789 Replies
    • February 8, 2007
    • 04:53 PM
    • 0
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  • I actually have the opposite then everyone else. About 7 years ago i was diagnosed with a pseudotumor cerebri which is excess spinal fluid causing pressure in my skull. This was because I was extremely overweight so i started a diet and lost 60lbs but the headaches persisted. About 2 years ago i was having some crazy symptoms like irregular periods even on birthcontrol, CONSTANT HEADACHES (daily), always tired to the point i needed naps during the day and my prolactin levels were high. The doctors did a scan of my head and supposedly saw a 5mmX5mm tumor i have been on cabergoline since then. My last scan showed a 3mmX3mm tumor. Now i am having side effects from the meds. Im still always tired, the headaches persist, insomnia and im losing hair because of all this I went to a neurosurgeon. My endocrinologist suggested it due to the symptoms. When i saw the neurosurgeon he told me that judging by my scan I don't have a tumor and my gland shows no sign of ever having one or even a pseudotumor. So now im all confused. I know this is a crazy question but did anyone else have a similar issue. I don;t understand how one doctor sees a tumor and a specialist doesn't.
    Anonymous 42,789 Replies Flag this Response
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