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Old 11-02-2011, 10:15 PM   #1
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Underlying cause?

Hi, I am 59 yrs old. I had a baseline scan in 2006 ordered by my obgyn when my primary dr said I didn't need a scan until I was 60. I was diagnosed with osterporosis. I took actonal for 4 months before ending up in ER with incredible pain and sweats. I then used the nasal spray. I begged to go to an endocrinologist through my HMO who said there was usually an underlying reason for it and some tests were run including muliple myloma. My blood calcium was normal, but my ionized calcium was high. My 24 hour urine calcium was 19...norm is 50-250. I asked the dr why the results were so low and was told it didnt mean anything so I asked why did the test exist? I guess I made her annoyed and she said she was done with me. I begged to see another endo who told me to stop taking the nasal spray as it should only be used for 2 years. He had never heard of stroninum and recommended estrogen. I said my mom had breast cancer, I had a back injury and wasn't active enough to rule out getting blood clots. So, I took calcium 4 times a day along with magnesium, D. My labs looked good. I had been complaining about severe night sweats and incredible body cramping so bad, I always keep pedialyte on hand and tonic water. I ended up at ER because the cramping was so bad in my chest, my doc thought I might be having a heart attack.
I had a laminectomy and discetomy in 2008 as a result of my work injury. I haven't felt well in a few years and through my HMO have been trying to get a lip biopsy for sjogren's syndrome but was told my HMO didn't have anyone qualified to do it and besides I don't have it. Years ago I was diagnosed with a mixed connective tissue disease, reynauds, fibromyalgia and sicca syndrome. Because I lost the vision in my eye for a few minutes (turned out to be narrow angle glaucoma) I had a ct scan of my brain. I have multiple, unusual calcifications that no one knows why. I did have a hysterectomy a year ago. No hormones.
Because my spine slipped forward, I was going to have a fusion and asked my surgeon for an osteroporosis scan to make sure everything was still ok and my numbers were in the 2's. Well, I am now 3.5 and high risk. The surgeon said he can't operate now and said something is wrong, I am too young to have it this bad. Bittersweet, because now I have proof that my calcium is being sucked from my bones. Gee, it was just a few weeks ago I asked my new primary in our new HMO to be referred to an endo because I wake up screaming with the cramps. I also asked to go to a rheumotologist. He said there is a mental disorder that people have who go dr shopping to find problems and he thinks I have it. I took my test results to him (they were done under w/c) and he referred me to an endo and a rheumotolgist saying my bones are very very bad. I am waiting for approval now. The next day I switched to a new dr who is out of town until Monday.
I looked up hypoparathyroid and read it can deposit calcium in the brain and cause the osteroporosis. I did have jaw surgery years ago. My fears are getting to me right now and I feel like a china doll
I don't drink, smoke, eat fatty foods nor take meds. In fact I had to avoid a lot of drugs because of the narrow eye angles. Sorry for the long post. Did you find you had an underlying cause for your osteroporosis? I havent been very active since my injury 2005. thanks, Melanie

 
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Old 11-07-2011, 06:41 PM   #2
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Re: Underlying cause?

Oh Melanie you sound like you've been through the mill and back. There could be an underlying cause like thyroid disorders or disorders of the parathyroid or conditions such as crohn's or food allergy or arthritis, or eating disorders, and menopause, they all can contribute to weak and thin bones, so can medication and lifestyle choices and family history. I sure don't like the response of your doctor when you asked why your calcium levels were so low and you got that response? Also the comment about people who have a mental disorder who go Dr. Shopping and you have it, how rude can that be. It was in your best interest to go find another doctor. Who needs a doctor who doesn't take your complaint seriously. All the best and hope you find your answers.

 
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Old 11-17-2011, 09:51 AM   #3
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Re: Underlying cause?

thank you for your response. The good news about the dr who told me I had a mental disorder is he suddenly and unexpectedly closed his practice a week later citing an extended medical leave. I got the referral from him before he closed and I certainly had my say with him. I also provided all kinds of information to him citing that some day he might have a patient like me and maybe if he learned something, the next patient might have some credibility.
I had lots of blood work done this morning and will do another 24 hr calcium urine test. The dr wouldn't order the ultrasound of my parathyroid until this blood work comes back. It's a start. I wish there was a lifestyle change I could address, but I do a healthy lifestyle. I don't even drink soda. I also am waiting for a referral to a kidney dr. yay.

 
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