She has gone without a confirmed diagnosis for nearly 8 years now.
She has had severe bladder pain that was tentatively diagnosed as interstitial cystitis but this is unconfirmed--muscle spasms, burning, frequent urge to empty bladder, sensitivity to foods. She has had episodes of severe edema in her hands, forearms, lower legs, and feet. She has a skin rash on her arms, hands, feet, and abdomen that comes and goes. Her lung function is impaired moreso than would be expected due to her smoking. She is a carrier of Alpha-1 Antitrypsin Deficiency Disorder, genotype MZ. She suffers from severe fatigue and falls asleep often during the day. She had the Parvovirus once and was almost misdiagnosed with Rheumatoid Arthritis. That was 4-5 years ago. She went on Prednisone for awhile but it destroyed the bones in her ankles and she has had surgery on one of them, but now has limited movement in that joint.
She has had a hysterectomy in an attempt to relieve bladder pain and spasming. It did not help. She is currently on a variety of medications--Oxycodone and Vicodin for the pain, Valium for the muscle aches, amphetamines for the fatigue, and about 10 others. Acupuncture alleviated much of the pain and she brought her Vicodin dosage down. Theorized diagnoses are sarcoidosis and lupus but these are unconfirmed. Insurance would not pay for a lung biopsy because one test showed improvement in lung function.
Please. Any answer would make our lives better than they have been for nearly 1/3 of my life.
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