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Old 06-23-2012, 01:05 PM   #1
diggingdeeper's Avatar
Join Date: Jun 2012
Location: philadelphia, pa, usa
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diggingdeeper HB User

I get headaches, backaches, extreme fatigue and weakness, dizziness and loss of consciousness and have fatty like tumors on my pituitary gland, and the parotid gland that have showed in MRI's. These have completely disappeared and returned in separate MRIís. I can feel them and at times see them on my spine, hips, knees, ankles, the base of my head and neck also in random other places. Most of these have their mild times and then periods that it becomes more severe, though I have been told by a specialist at University of Penn that itís just fat pockets and I am making up the all the pain. I had a lymphangioma removed in early childhood that surrounded my jugular. I have had symptoms as long as I can remember that have come and gone and the symptoms are always changing. Iíve always been told its nothing to worry about itís just a lymphangioma and it should just be observed until it cosmetically bothered me. It doesnít! I am normal looking. Unless I point out the abnormalities, then you would see one of my eyes is much smaller than the other and my face is asymmetrical. By the way I have no medical insurance. Have applied for help and been turned down over and over. I am told itís not a definite diagnosis until they pull out a tumor and test it but that the ones I caught on MRI are consistent with a lymphangioma. I was also told there is no government help without a diagnosis. Anyway I used to believe that the lymphangioma was the complete diagnosis and it was pretty much treated for cosmetic reasons and since I am normal looking now why would I have these doctors hack me to pieces and pay them to do it. I am now wondering if the lymphangioma is just a symptom to another condition or syndrome. Most recent tumors appeared on the back of my neck and right side of my face and my knee and ankle. These all showed up within the last week. I can barely walk around at this point and I donít know what I can do. Please Help if you know anything about this rare malformation and if you could help me understand why mine pops up all over my body and cause debilitating pain when it's "just a lymphangioma" It's merely cosmetic.?.?.?.?

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benign tumor, congenital, lymph, pain, undiagnoised

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