Discussions By Condition: Medical Errors

Would you please help me(urgently)

Posted In: Medical Errors 5 Replies
  • Posted By: FannyLu
  • June 13, 2008
  • 02:05 PM

This is Fanny Lu, female, a young woman with oncongenic hyphphosphatemic osteomalacia, who lives in Guangzhou China Mainland & is suffering from this strange disease for almost seven years. Before that, I was a lovely girl with excellent health and even seldom to have a fever or catch a cold.

I have been suffering this disease for nearly seven years since this disease is often disappear in Europe, but seldom in Asia, especially in China. So I haven’t got a definite diagnosis until at the end of year 2003 & did not obtain the suitable medication for further treatment.

My physicians here also highly betting TIO cause my lower phosphors and FGF23 is higher than normal range. So I have been informed to do more and more exactitude whole body check to see if any tumors in my body to cause it. But unfortunately they also haven’t found any tumors again in my body.They’re nail-biting of my strange disease.

I feel so painful. Now I have to walk on crutch very slowly & stay at home everyday to wait for God coming. This disease is not cancer & would be treatable. It’s so melancholy to being handicapped as so young by a treatable disease.

It’s become a strange disease here. NO any equipments to find this tiny tumors in my body in China. and NO any organization or foundation would help me to seek any help from worldwide. I know there is a foundation which concern this disease in USA and do more exercises with this disease. Could you please help me to find it out? I don’t want to being the third handicapped in my family.

Though it sounds an uncertain thought, but if there is any a little chance for me, I still want to have a try since I am still younger & full of desiring to live in this world.

Any information would be appreciatate.You could reach me by: FannyLu2004@hotmail.com at your convience time.

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5 Replies:

  • Did your doctors check your vitamin D status, calcium, magnesium levels. Have you worked in a factory or been exposed to aluminum or lead? A google search revealed this ::: Excessive dietary aluminum can also form insoluble aluminum phosphates in the GI tract and may lead to hypophosphatemia.
    LINENUP 122 Replies Flag this Response
  • this may be helpful :: they talk about aluminum as being a culprit (coming from antacids which some contain aluminum) OsteomalaciaOsteomalacia is a disorder in which the structural and metabolic functions of the skeleton are impaired because newly formed bone matrix fails to mineralize. It usually results from vitamin D deficiency. Symptoms may include bone pain, myalgias, weakness, and fragility fractures. Diagnosis is with x-rays and serum levels of Ca, phosphate, alkaline phosphatase, parathyroid hormone, and vitamin D. Treatment is directed at the cause, which usually involves giving supplemental vitamin D.Geriatric EssentialsVitamin D deficiency is common in the elderly, particularly those deprived of sunlight (eg, those housebound or in a nursing home) or who have undernutrition.Osteomalacia should be suspected in patients with typical ribbonlike cortical lucencies (pseudofractures) that are found with plain x-rays and in patients in whom the serum Ca level is low or low-normal, the serum phosphorus level is low, and the serum alkaline phosphatase and parathyroid hormone levels are high.Elderly patients with osteomalacia usually require supplemental vitamin D and Ca.Osteomalacia (analogous to rickets in children) is relatively rare in the elderly, although deficiency of vitamin D and Ca is common.Vitamin D is really a prohormone. It can be synthesized in the skin in response to specific wavelengths of ultraviolet light that are in sunlight or it can be obtained in the diet. Dietary sources of vitamin D (eg, fish liver oils, egg yolks, and, in many developed nations, some fortified foods) usually supply only a small portion of the daily requirement, so exposure to sunlight is usually required to maintain adequate vitamin D stores. In people EtiologyOsteomalacia may result from moderate to severe vitamin D deficiency. Patients with mild to moderate vitamin D deficiency usually have osteoporosis rather than osteomalacia.Vitamin D deficiency may be caused by inadequate synthesis of vitamin D in patients who get little sun exposure because they live in northern latitudes or are housebound or in a nursing home or because they stay indoors during the winter months. Impairment of small-bowel absorption of dietary vitamin D in elderly patients with fat malabsorption or hypoparathyroidism can also contribute to deficiency.Impairment of hepatic hydroxylation to 25-hydroxyvitamin D occurs in patients with severe liver disease and in those taking drugs that alter hepatic hydroxylases, especially anticonvulsants such as phenytoin, barbiturates, or carbamazepine. Impairment of conversion to 1,25-dihydroxyvitamin D is commonly due to loss of renal 1http://a248.e.akamai.net/7/248/430/20070702145420/www.merck.com/mkgr/mmg/images/salpha.gif-hydroxylase activity in renal failure.Vitamin D deficiency usually causes hypocalcemia, which stimulates parathyroid hormone (PTH) production, resulting in hyperparathyroidism. Hyperparathyroidism causes increased bone resorption and decreased urinary excretion of Ca, which results in normalization of serum Ca level in most patients with vitamin D deficiency. On the other hand, PTH increases the urinary excretion of phosphate, which, combined with decreased intestinal absorption, causes hypophosphatemia.Phosphate deficiency (with resulting hypophosphatemia) can cause osteomalacia by impairing bone mineralization. Hypophosphatemia rarely results from inadequate dietary intake, but it can result from impaired absorption (eg, due to malabsorption syndromes or vitamin D deficiency) or from renal losses (eg, due to hyperparathyroidism or congenital disorders of renal phosphate transport). Hypophosphatemia can result from ingesting large amounts of phosphate-binding antacids (eg, aluminum hydroxide). One form of hypophosphatemic osteomalacia, neoplastic or oncogenic osteomalacia, is associated with tumors of mesenchymal origin (such as tumors originating in connective tissue, muscle, or endothelium), but the hypophosphatemia may be due to inhibition of 1http://a248.e.akamai.net/7/248/430/20070702145420/www.merck.com/mkgr/mmg/images/salpha.gif-hydroxylase in the kidney.Ca deficiency very rarely causes osteomalacia.
    LINENUP 122 Replies Flag this Response
  • Have you gone to a Traditional Chinese Medical hospital?DOM
    acuann 3080 Replies Flag this Response
  • Did your doctors check your vitamin D status, calcium, magnesium levels. Have you worked in a factory or been exposed to aluminum or lead? A google search revealed this ::: Excessive dietary aluminum can also form insoluble aluminum phosphates in the GI tract and may lead to hypophosphatemia.Thanks for your information. My doctors had checked all the levels including vitamin D status and calcium, etc for me already. But it seems normal range. Yes, I have worked in a factory as a junior management level and always stayed in office and even seldom to disapear in workshop. but they're very close. This factory is produce shaver. You really give new point for me and I will report it to my doctors to seek if that something missed. Appreciation for your kindly help.
    FannyLu 2 Replies Flag this Response
  • Have you gone to a Traditional Chinese Medical hospital?DOM yes, I live in Guangzhou,China, I have gone to all the traditional hospital in this city and both in BeiJing or Shanghai here. but it's very seldom to dispear in China so they're nail-biting for this strange disease.:(
    FannyLu 2 Replies Flag this Response
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