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Old 05-17-2010, 08:00 PM #1
ashankhara ashankhara is offline
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Join Date: May 2010
Posts: 1
10 yr Member
ashankhara ashankhara is offline
New Member
 
Join Date: May 2010
Posts: 1
10 yr Member
Default Let me introduce myself

My son just turned 18 and has a yet undiagnosed, chronic syndrome or disorder. We have been to numerous specialist and although many diseases have been ruled out, nothing yet has been ruled in. He just found out today that he will get to graduate from highschool after missing months of school due to his illness . It has been hard on both of us, but we try to look at the positive. He does not have cancer, lupus, leukemia, or a variety of other auto-immune disorders. His main symptoms are transient body pain, constant pain centrally located in his left knee and hip, chronic mouth and throat ulcers similar to canker sores, low white blood cell count, vitamin D deficiency, low body weight (he is 6'1" and is down to 114 pounds) and is fatigued most of the time. Throughout the past 14th months we have been to neurologists, rheumatologists, internalists, allergists, and a pain clinic and nothing has been resolved. Until his junior year, Josh ran cross country track. Now he "walks" with a cane and has to use a wheelchair for long outings because he simply is in too much pain and just runs out of energy. We have tried a slew of medications. He just started taking Savella (he was tried previously on amytriptyline, neurontin, and cymbalta) and also takes Opana, propranolol, and a flector patches and a variety of vitamins and minerals to help. It is very frustrating not knowing how to help him and seeing him in pain and frustration and not knowing what to do. I hope that I can learn more from others going through similar situations and give and receive moral support. I am looking forward to hearing from other people who are going through this sort of thing or who have friends or loved ones going through this. Any advise, options, horror stories, or new ideas are most welcome. Thanks and I am glad to meet everyone in advance,

Sheryl
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