I am at a loss. I was in a car accident in Aug 2009, in Mar 2010 (no idea if it has been part of the cause). I then had a diagnostic laparoscopy for pelvic pain related to the accident. Showed that I have pelvic varices & prolapsed everything. Since that operation I have had systemic illness with severe apthous ulcers, 35 lb weight loss, extreme fatigue, difficulty concentrating & left arm & shoulder pain, among other things. I was initially diagnosed with Bechets but then Hopkins said no (however, when they saw me the sores weren't present & they did no testing). The pain in my arm is unrelenting & probably at present my biggest, most constant problem. Although the ulcers can be severe & ended me up in the hospital for 4 days in Sept 2010 because I couldn't eat, speak or even drink. I have seen every specialist. Endocrinology, GI, Gyn, neuro, rheum, ortho, dentist, oral surgeon, infectious disease, vasculitis sp. They all come up with nothing. Tests normal, I have had excisional biopsy of lesions in mouth that came back negative for immune assays and was unspecific but like "lichen planus", they've been swabbed & are neg for viral like HSV (although that's what Hopkins said to treat for). I have been on acyclovir, colchicine but the only thing that helps is prednisone. The only tests that have been off are CRP & sed rate & high lymphocytes & eosinophils. But now I am getting really concerned because I swear my left supraclavicular lymph node is big & hard, & there are a couple of other lymph nodes that seem hard & swollen. It seems my lymph nodes have been swollen for a year, & the doctors do notice but have chalked it up to the mouth ulcers. I am so tired of looking like the crazy lady @ the dr office drawing attention to every odd little thing I notice but my docs are @ a loss too. The pain in my left arm & neck has the same S&S as thoracic outlet syndrome. My hand turns white, numb & tingles. But the pain is constant, my ortho gave me a cortisone injection to my shoulder & that has helped with numbness & tingling but not pain in arm, neck, scapula, & ribs. I am tired of everyone looking at me like I'm crazy because all tests are ok. *Even my short term disability was denied because they say everything shows up "normal" so I have had to stop working as a RN in the OR, a job that is very physically & mentally demanding, and give up a very good salary to stay home without any pay & try to figure this out & get well. I don't know what to do. I am 36 yrs old & too young to feel like an invalid, I have been out of work now for over 8 weeks and i have exhausted my FMLA *& I really think if I go back to work I'm going to have to look @ some other areas in nursing. I need some advice on what to do next. Right now I go to PT (pool therapy) & do my best to just keep moving & looking for answers. I would truly be grateful for any ideas or suggestions. Help! Please I am trying to attach a copy of a pic of the mouth sores but don't think I can do it from my iPhone, any suggestions?Reply Follow This Thread Stop Following This Thread Flag this Discussion
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