And It's About Time There Was Some Support For Cushing's!
I am undiagnosed and pray that one of my many doctors will finally figure out how to diagnois me.
Jan 27,2000....woke with a massive vascular migraine that was so severe that I was immediately and seriously nausetated. Was in so much pain, I immediately and permanently gave up a 34 year cigarette habit......My thought being that I was prepared to give up anything to make the pain go away. Wound up in the hospital and treated with some form of morphine to break the pain and released late that evening.
Feb, 2000...saw the docter that treated me in the hospital. Told him that I was still having headaches everyday and all day long, but not the vascular migraine. He prescribe a pain medication that didn't help and I went back to alternating tylenol and advil. Mentioned to the doctor that I felt different somehow, but couldn't put my finger on it. My period startted later in the month but instead of the painful heavy and drawn out period (8 days) it stopped in less than four days. Mentioned it to the doctor when I saw him in March and since I was 49, thought it was related to menapause.
March, 2000 back in the hospital with another vascular migraine. This time a neurologist was brought in to evaulate me after they broke my migraine. He did a simple neuro test and ordered neck xrays and CT scans but other than some arthritis in my 2nd, 5th and 6th vertebrae, nothing else was found. Saw him later in his office and he put me on depakote. He also loaded me up with every sample of new medication that they have for migraines now, meant to stop them before they became unmanageable........they never worked. Had four more episodes of vascular migraine attacks by June of that year. My blood pressure which had always been low climbed to very high and my doctors determined that it was from the pain but agreed with the ER doctor's decision to put me on a blood pressure pill with a beta blocker. My daily headaches finally went away permanently and I no longer had vascular migraine attacks. But I gained forty pounds in four months and the neurologist took me off depakote and put me on Topamax. Took that for a couple of months but had to quit it because it was destroying my throat. But even though I was off any meds for Migraines, I didn't have any further episodes, so figured that the blood pressure medication was doing the job. In the meantime, I am still gaining weight, continually and my periods had pretty much stopped except for spotting here and there.
2003......blood work that my primary ordered, results in a report of hypercalcemia. Referred me over to a rheumatologist in the same practice who began checking and monitoring my hypercalcemia. He also had numerous parathyroid tests done as well as a bone scan that showed no problems, but did discover that one of my kidneys had atrophied. When it dropped back into a normal range, he referred me back to my primary. He also referred me to a Naphrologist for monitoring the health of my remaining kidney. The next blood work again found my calcium levels high and again and they have been like that ever since.
2005....Tests continued to show high calcuim levels, but additional tests for para thyroid disease keeps coming back negative. Kidney doctor ordered multi-testing but he could not determine a reason for my high calcuim levels. So he referred me to and Endocrinologist, who put me through a tests, both scans and bloodwork, and he said while I do have a slight case of hyper thyroidism, it was nothing that required treatment at this time and neither could he come up with a reason for my hypercalcemia and referred me back to my primary.
Now it is 2007 and from the first episode with the vascular migraines till now, I have gained 135 pounds and still gaining, with no end in sight. It never stops. It has been seven since the my life seems to have been in a skid with chronic weight gain, bad skin, chronic fatigue, back pain that I am now having to use a pain patch and still I take tylenol or advil to assist the pain med. I have been feeling like an eighty year old woman for a very long time and with the chronic weight gain and back pain, my life has come to a screeching halt and my mobility is now very limited.
I don't like the idea of self diagnoising myself anymore that my doctors' like it, but twice now, I have view programs on television that were about Cushings Disease and so many of the aspects about this disease are similar to what I am feeling and one of the programs linked it to hypercalcemia, so I am left thinking that all of my problems lead from there. Wish I could ask my doctor to test me for that, but most of the tests for cushings seem to screen for high levels of cortisol and little to nothing is referenced to hypercalcemia.
Anyway, I see no end in sight for my problems and only a continuation of the same with more weight gain and more pains in my joints and back from the weight.